Arika Falling

Back at appointments again today and relieved to feel like the wheels are rolling again. Inpatient was slow and frustrating and while outpatient is too but with better perks like decent wifi, a bed that’s not made of plastic, the company of my baby girl, and freedom/reasons to get out and about, appointments keep health problems in a contained time and space rather than being confined in a space that is specifically for illness. I know it was only a few weeks in hospital but being there and adjusting to Paraparesis has made me lose myself a fair bit. I seem to have gone into some sort of dissociative internal lockdown and let things just happen. It’s become detrimental now though so I’m determined to wake up and come back into my life and myself. When day after day is about survival — trying to get enough nutrition in, staying on top of meds, organising appointment schedules, pushing papers of notes, referrals, appointments, prescriptions, ACC & WINZ forms etc. — it’s so hard to remember to at least try to live in amongst it all. It’s so hard to not just lie down in pain and exhaustion and give up on trying to make things better. It’s so hard to maintain a sense of self beyond it. It’s easy for it to be all-consuming. It’s been all-consuming for me for a while now and, though I hate it, I don’t yet know if it’s bad, okay, or perhaps simply inevitable for the time being. So maybe for now, my life is about both surviving and hunting down ways to make improvements. I might have to be okay with that. But too, as I write that, I realise that may be all it ever is. It’s that way for many people. You never know. I think you have to learn to find perspectives to feel you are valuable within that. I think attitude can easily be one’s biggest limitation in a reality like this and it’s something we get to have a say in while a lot of things seem like you don’t get to choose. I best work on making the right choice. - [Image: Cait in their wheelchair in a bland clinical waiting room. Their posture is relaxed. They’re wearing jeans and a tee with work boots and a tasseled cardigan.] (at Wellington, New Zealand) https://www.instagram.com/p/B0xuJTPg_T3/?igshid=qvlvpfa0w3x3

And so I spent 15 days in hospital. Insanely, filling in my bullet journal last night on the 31st, I counted just 5 days in July where I wasn’t at or in the hospital. It’s August now though and I have well and truly had enough of the place. I wish I could say it was helpful and I feel better but little, next to no, progress was made. Which brings me to the thought I really want to share: all of the last 2 years I have said that chronic illness is easier than what mental illness was for me at my worst. After last month and particularly the last week, I revoke that. Chronic illness; chronic pain; disability; it’s hard. It’s so so hard. It’s unfair and it’s crushing. At one point I wrote: “My existence feels so vapid and I don’t know how to make it otherwise.” The thought of facing the same draining and losing battles endlessly was intolerable. I have learned things in my journey thus far with mental illness, however, that I am determined to use to my advantage so I come back to something I summed up a while back: “My life is consumed by illness but I refuse to believe it will always be this way. I defiantly believe that this is temporary. I will accept. I will try to embrace. For those are the keys to being freed of the crushing notion that my existence is vapid and holds no value. My existence is valuable if I make it so. My story is worth telling if I live for tomorrow, the time when I have triumphed over, around, or through the barriers of my mind and body. Yes, for now, my world is small and filled with the medical. But I reprobate this concept that the me I am now is the me I’ll always be. I am enough now for what I have now. What I have will change, I’m determined of that, and when it does, I will rise to the challenge of continuing to be valid. I reject consumption by the vapid.” July was hard and yes most of it was spent in hospital. It was just another hard month though really. I’ve had plenty of those and I’ll have more and I’ll be okay in the end. - [Image: the view from a hospital bed in a private ward room. The bathroom door is bright yellow, to the left is the sink and gloves supply. The end of the bed has some personal belongings on it.] (at Wellington Hospital) https://www.instagram.com/p/B0nQ0Z4ghxv/?igshid=hiedrjruimh6

I’ve been in hospital for a week... I was discharged last Saturday and my paralysis got worse rather than better, as neuro had predicted, so I was readmitted on Tuesday afternoon last week I’ve done a lot of physio, puking, praying, and thinking 💭 I don’t want this page to be a personal account of my life nor my health. I’ve decided life is going to happen as health allows regardless and that this is not the place for that story. I think what I do want to attempt sharing are the lessons learned and the musings on certain experiences. This week; the reality that I can throw as much glitter and makeup and positivity at chronic illness as I like and it will still suck. Because, it does. It just does. Having my youth taken away from me by a sick mind and a broken body is shit. It’s not fair and it’s hard and it feels impossible sometimes. I have dwelled on kalopsia; decided it’s like most things and best in moderation. Because, while being sick for 11 years straight at 23 is unfair bullshit, dwelling on that will only make things worse. I have learned to flip that perspective on its head and find every clouds silver lining and the bud of the rose on any thorn. The distinction for keeping it real I think after all that is simple: balance. I’ve mastered both extremes and I must push and pull as necessary to remain sane AND grounded. Think “every day may not be good but there is something good in every day” — Being sick sucks, but not everything about it does. [Image: Cait sits in their hospital bed hugging a hot water bottle and smirking at the camera. Their overbed table is behind them with bottles and books on it in front of green patterned curtains. Their wheelchair is next to the bed. They wear jeans and a tee with sneakers and a beanie.] https://www.instagram.com/p/B0QTSLUgiMQ/?igshid=slyuxwtutowu

Kalopsia is the delusion of things being more beautiful than they are. So when does strength, courage, and positivity become kalopsic? Maybe it’s when we embrace adaptations that should not be required; step into a realm of existence that is unreasonable, with acceptance. Maybe it’s when we refuse to let go of the glow of the little things to the degree that we deny the truth of the desperate big picture. Maybe it could be analogous to being so caught up in the warmth of the fire that we don’t realise the house is burning down around us. Today I question whether I have been in a state of kalopsia. I learned that I have reached the human epitome of self denial and overachieving. I cannot move my legs because of functional paralysis, a condition which we have now discerned has developed as my nervous system’s way of forcing me to stop and smell the roses, so to speak. Put simply (and it is far from simple), my being is beyond exhausted and the time for being strong and brave and positive? Well, it is not now. Now is the time to swallow the jagged pill that I cannot continue the way I have been, that tube feeds are on the table along with inpatient rehab to address nutrition, mobility, pain management, and self cares. This is insane. The human body has some incredible defensive skills apparently. It’s happened fast and I’m overwhelmed. I haven’t processed any of it, but I’m beginning by weighing what got me here with the concept that is kalopsia. - [Image: a photograph of a paint set next to a sketch pad where a hand drawing has been done in pencil of a manual wheelchair and block coloured with watercolours in pink, yellow, and grey] https://www.instagram.com/p/B0A4rrIgJaf/?igshid=gk8ebifpm6k

So I’m in hospital. On Tuesday night I had a bilateral patella subluxation which was painful but not unusual for me. I had reduced sensation and movement below the knee afterward but it was 10.30pm and I was literally getting into bed so just slept on it. When I woke up I could barely feel my feet at all and couldn’t move them. I sent my physio an email, with pictures of the injury as a heads up for the appointment we had that afternoon. I saw her and she poked and prodded and sent an urgent referral to orthopaedics and sent me to ED. Ortho confirmed the injury from the photos but said an injury like that couldn’t possibly cause my symptoms so referred my to neuro. The consensus now is that the injury put my perineal nerves into shock so my feet and ankles are paralysed until more work with physio can remind the nerves to be nerves. Just to make sure it wasn’t cauda equina I had a spinal MRI which was clear as expected and I’ve been here since to work with physio and OT to help me figure out how I can manage at home and take a few steps on crutches using compensation techniques to be able to walk at least a little bit again as home is not 100% wheelchair accessible. Going home sometime today and so keen for that as well as so thankful for all the people who’ve been praying. - [Image: Cait leaning on their left arm propped up in a hospital bed in a gown. They are bare faced but for piercings and specs and have an IV line in their right hand. They are smiling meekly.] https://www.instagram.com/p/Bz1T_jAgxZK/?igshid=16ohxcgktnexq

Sunday winter fashion slam💥 This whole look is thrifted, even the yarn I made the gloves out of #thriftlorde I wanted today to be as good as possible and I wanted to show my best in Gods house. I think I pulled it off and the morning was good, despite the woes of the week. Right now I’m trying to hold onto that and all the other occasions of past in which good times have come beyond times of incredulous frustration, fear, depression. Because, I went to church and worshipped and prayed, I rolled down my favourite street in the sun to get meds and fortisip, and the afternoon has been massacred by fatigue, a particularly painful patella subluxtion that’s relocation came with an unusually nasty crunch, and pain and nausea up almost as high as they ever really get. Oh the dynamics of illness. Nothing is linear. Everything is chance so every good moment is a blessing. Now just contemplating (or rather trying not to) how to get through the night now that I’m maxed on meds and out of ideas for self help. Who knows, maybe if I can get some sleep, I’ll wake up in the morning ready to slay again? - [Image: Cait poses in their wheelchair in front of a brightly coloured building of blue with patches of orange tones. Their hair is a natural strawberry blonde in a modern bowl cut. They’re wearing wire rimmed specs, a black top and tights with a green snakeskin pencil skirt and faux fur vest, and black and leopard print sneakers.] (at Wellington Central) https://www.instagram.com/p/Bzm2eqIg7Kh/?igshid=1ecbp0of0nx8h

A candid moment and this thought: Where does the illusion come from that we “sign up for” things in life? I know I didn’t sign up for pain or trauma or sickness or torment, and who would? We don’t really get to decide what happens in our lives, do we? We make plans and set goals, but really it’s just down to choices and chance but we do get to decide what we do with what do we’re given. And, let’s be honest, we’re all fumbling through blindly and deftly and doing the best we can. I am anyway and I’m sure I’m not alone. So yes, I resent having spent another day at the hospital and I didn’t “sign up for” a whole day waiting here, but there have been smiles and there has been company and lessons learned. I decided a long time ago to be alongside my partner whatever that meant. And though of course I hope for better, I know that the only way out is through. So I fight as best as I know how and along the way I try to catch goodness when it flutters by. - [Image: Cait leans their right arm on an unseen surface, resting their chin on their hand. They are wearing a protective mask but have smiling eyes. They have on a striped top and denim blazer with headphones round their neck. The wall behind is light blue with chipboard panelling.] (at Wellington Hospital-New Zealand) https://www.instagram.com/p/BzkJUGcgpIj/?igshid=5611xvslsqnv

It’s been a rough week. It had all the potential to be a good one and I honestly didn’t see the shitstorm coming but it came indeed... Shit tends to go like that when your fiancé is sick, addicted to your meds, and had a death-wish in withdrawals. Doesn’t help when your body is fucking useless and mind, fragile. Oh well... it’s over! We made it through, I made it through. Tomorrow is a new day and there’s a new week on its way too. I spent most of the week in bed or curled up by the fire, staying at mums while baby girl was in the hospital. It was rest and respite. I’m determined that better days are coming though, I will fight and I will wait if I have to but I am seeing this shit through — didn’t come this far to resign to life being too hard. - [Image: Cait sat in a living room in their wheelchair in front of a roaring fire with a tall house plant by it and wood stacked on the hearth. They’re wearing jeans and a red sweater with a black beanie, hugging a hot water bottle and staring into the flames.] (at Pukerua Bay) https://www.instagram.com/p/BzhgnPAAEf7/?igshid=1e5n42d1cc02b

How do you even begin to express the pain of seeing the one you love, suffer. How do you distinguish what is left of them, the glitter in their eyes and the caress of their voice, from death wishes and blindly bold lies? How do you soothe a heart that only just manages to pull that sweet soul back from the void of nonexistence; as you see the life leak out of them and your body is too broken to pull them out of the sorrow they’re suffocating in? How many nights can you sit awake in the emergency room with The Fray ringing in your ears — “I would have stayed up with you all night had I known how to save a life” — telling yourself that you do know how and you will stay up and yet their sorrow starts dragging you down. At what point are you no longer the pillar of strength but a life raft so rocked by someone else’s sea that you’re sinking along with them? Is there a time to draw a line in the sand? Is keeping your own feet on the land ever going to be more valuable than rescuing them from their wreckage where they bury themselves, exclaiming desire for redemption? - [Image: A vibrant photograph of a wall that has been papered with many many artworks which has symgonium vines growing from wall and floor planters over the art.] https://www.instagram.com/p/BzYMntLAo0A/?igshid=1w1l71jqw84qy

Halfway point. The middle of 2019 and I’m at a junction, in the middle of a time of uncertainty, one foot in what was and one foot in what is, waiting for what is yet to come. I’ve been hiding away from the world for almost a week. I’ve had a couple of triumphs of a coffee date with my family, one with our pastor; over an hour at the studio today. My joints are markedly happier the less I put them through but that in itself is frightening as much as it is a relief. Stomach pains have been close to unbearable — that’s what’s mostly responsible for my slump. It doesn’t make sense but, does it have to? It is gratifying in a twisted sort of way also that the GES I had on Friday confirmed our hypothesis that gastroparesis has gotten worse. That is where I say I have one foot in what was: I am waiting for appointment days with this and that person to work on what the treatment plan will be. There’s still one drug I haven’t tried, I know there are other supplement options also. As I type that, my drs words from 2 weeks ago ring in my head: “you’ve got a long hard road ahead of you and you have to fight” Hmm. My art is going well, if only I could find the time where I have strength and energy to spend more time on it and immersed at the studio. I feel like chronic illnesses make me do a lot of waiting: waiting for explanations and appointment and treatments and improvements. It’s so hellishly frustrating. I looked up all the literature courses at the local universities and techs and I so want to move through to that point but I’m stuck waiting for appointments so we can wait for a plan so we can wait to see if it works.... ugh! You get the picture 🙄 I haven’t come this far to only get this far and I’m determined I will keep moving forward even if it takes as long as it did to get as far as I have mentally. Even my mum called me brave. I guess I must be doing something right.... - [Image: portrait photograph of Cait in a stark white room with a blue door. They are wearing tortoiseshell specs, looking right at the camera. Their face is bare. They are wearing camo gloves and a green and yellow baggy cardigan. Their silver headphones are around their neck.] (at Mount Cook, Wellington) https://www.instagram.com/p/BzXKancg0qf/?igshid=skh3re9gbtuu

Apparently acceptance of who you are, good-bad-and-ugly, is only the first step. Apparently the real key to being okay in your own skin is to embrace yourself, good-bad-and-ugly. I’ve been thinking so hard on these ideas in myself and with whānau and health professionals for years and years and specifically in those terms in recent months. And, in recent weeks, I’ve been attempting to apply the concept to the aspects of myself that I’m finding hardest to feel okay about which include the fact that physio has been halted and I’ve been told to stop walking entirely, until my nutrition is adequate for doing the work; that I’m wearing the same size and brand of jeans I was in my last serious anorexia relapse against all my efforts; that my days are so typically that of a “sick person” (gross stereotypical generalisation I know) and I resent it..... I think I’m doing what I do best though and pushing too hard, aiming too high, putting my energy in the wrong direction. These aspects are wrapped in so much uncertainty none of which is in my control. Why even try to embrace them? It’s like trying to hug smoke! I’m going to let those parts unfold. It will be what it will be. I’m going to focus on what I have a chance at accepting, embracing. My identity as a spouse, a sibling, as enby, an artist, a writer, as a person who loves fashion and learning, keeping things organised and aesthetically pleasing. I must not let myself think that these are feeble things in any way. I am not my body, therefore I am not what’s wrong with it. I cannot escape either of course, yet there is more. There is more. - [Image: Cait sits in their wheelchair on an orange brick footpath. They are not looking at the camera. They’re wearing a black shirt and blue high waisted skinny jeans with tan work boots, a dark denim blazer, and a striped snood. Behind them is a parked bicycle and some shop fronts.] (at Cuba Street, Wellington) https://www.instagram.com/p/BzICGNUgRH5/?igshid=5aocc99kzeuc

Once you accept who you are, being that person becomes the easiest thing to do. You don’t have to like it all: There will of course be flaws and imperfections and bits you’re embarrassed of. If you can accept them for what they are though, they hold very little power over you. I think even if you see a part of yourself for what it is and know that it’s only that way for now, or that you want to work to change it, that makes the job so much gentler than holding it over yourself and using it to douse yourself in shoulds and don’ts, shame and denial. I know I have parts of myself I am not proud of and I am learning to face them. There are parts that scare me that I’m trying to allow myself to explore gently. Even parts that I love I question myself about their true value every now and then, just to check in on myself. I’m permanently a work in progress, aren’t we all? But why tear down in angry shame and fearfully rebuild on false foundations, when we can explore curiously and alter things with a kindly “I have a better idea”. • Spent the weekend away with baby girl at my mums place to get a break. It had been planned for weeks and turned out the timing was impeccable for how circumstances turned out. I resent the ER trip that punctured it. I won’t be going back to that place unless I have no choice. Not even as a support person. Over. It. Back home today and trying to keep up with life.... [Image: Cait sits on the floor taking a mirror selfie in a small white room. Their right leg bent and resting on the floor with their right arm holding onto their left leg which is bent over the left one. They are wearing jeans and a T-shirt with a baggy cardigan and white sneakers.] (at Pukerua Bay) https://www.instagram.com/p/BzEuwiFAr-t/?igshid=1oc4y8ruq5sez

If only slaying a perfectly gender-affirming outfit was the key to a perfect day... I must say it helps though — especially when it’s this comfortable 😂 Today has not turned out how I thought it was going to as I was having my coffee at 7am... up until these photos were taken I thought it was a day I’d get to spend working at the studio via the lab for bloods. I was keen for some normality. What’s actually happened is spending the whole day from labs to medical centre to ER where we are still waiting. Katie Rose is not well at all and owned up today to, alongside long-standing mental illnesses and physical pain, a pretty serious opioid addiction and I now know that it has not in fact been one of my alters messing with my lock box and taking my pain meds. I don’t know yet how I feel about the fact my fiancé has been stealing medication I rely on to allow me to have some sort of life and keep myself out of the ER as a patient where I am today as her support. Its much to process but firstly she has to be safe and I need a new solution to how I store my pain meds. Katie has a tonne of work to do for herself and we too as a couple. This is not what I want for my life, for our lives. I can only keep praying for the seas to settle soon. - [Image: Cait stands in front of a dark wardrobe in their apartment using elbow crutches. They are wearing a black long sleeve dress with a yellow and red tee over top, black crew socks and sneakers. Image: same as first but in a slightly different pose and a velvet bomber jacket over the tee.] (at Wellington Central) https://www.instagram.com/p/By2BxL-A78o/?igshid=1v0fr18vpa9u1

Good days are always a welcome blessing: It takes so little to make a big difference! Some sunshine 🌞 A ☕️ out with good company and funky vibes Some help to do an ordinary task that makes it go from a mountain to a hill. • This phase of life I’m in — post acute mental illness and discovering what chronic illness will mean for me and how to treat it — feels as though it’s determined to beat me into submission and pessimism and to steal me away from good things. I want so much for it not to and so I keep pushing and embracing changes as much as I can. I just keep trying and trying to find ways to make this part of the journey okay without losing myself along the way. Some of them are unhealthy perhaps, but I have to try and if I learn a lesson the hard way, then so be it. I think days like today though, where there’s more light and love and warmth within the simplest of things will always be welcome as heathy reminders that there are good days within bad times, and as reminders too of why life is worth fighting for. - [Image Description: Cait sits at a table in a café. The café has rough brick walls and industrial furnishings with many plants and works of art. Cait has their left arm on the table, their chin resting in their hand. They are wearing blue and bronze eye makeup and a red plaid jumper. They have a modern bowl haircut in their natural colour of chestnut brown.] (at Caffiend) https://www.instagram.com/p/ByzKQPWge11/?igshid=gqdk2ui5c723

✔️ Body Positivity.... 🤔 I have an incomplete view on this concept. I spent 10 years in the thick of a restrictive eating disorder and was often heard renouncing I would rather be thin and die than be “fat” and live. That’s sick, let’s establish that right now. I was very much not well and my hatred and obsession of my body was an outlet for many unresolved problems. Now, I am out the other side of anorexia and my body is falling short in ways I never imagined. 5 years ago for instance, I was recovering to get out of hospitals and wheelchairs and away from fortisip and blood tests, so I could go back to gymnastics and snowboarding and school and “live life to the fullest”. Now I depend on my wheelchair to leave the house, am on a first name basis with many more health professionals than I care to admit, and rely on tests (bloods among them) to help doctors know how to keep me alive. It was hard to be positive about a body that objectified my emotional pain. It is confusing to attempt to be positive about a body that has so doesn’t work how it is supposed to. Perhaps there is a way to wrap the bopo philosophy around my vessel and it’s past, present, and future (whatever that holds). But for now I don’t pressure myself to be positive about my body and I don’t think anyone else should have to either. I’m not ready to celebrate my body and I never have been but I’m still trucking along, I don’t loathe myself and honestly I think it’s okay to just be. - [Image Description: Cait in their wheelchair on a small patio in a garden: they are wearing makeup, tan skinny jeans, a stripy top, and a pinstriped blazer with badges on it. There are silver headphones round their neck.] (at Wellington, New Zealand) https://www.instagram.com/p/Byt6NmEgMSx/?igshid=yu5ieaaymtgg

❓mood❓ I’ve not been myself lately. I’ve been feeling surreal within my body and life. True, there is uncertainty and changes contributing to that. I cannot deny the bizarreness of losing weight and being able to see it for the first time. I cannot deny the discomfort that comes with the truth of disability sinking in. And housing 8 identities in one body has always made finding a solid sense of self seemingly impossible. I’m tired of trying to find myself though and I want to give up trying to create whoever that person is supposed to be. Classically to my personal history, I actually believe I’ve majorly overthought it. I think I just need to be; trust; feel; leave critical analysis out of it for a good long while. Mental illness had eaten me alive by the time I got to ashburn and what I’ve so far built back up, as messy and tangled as it may be, chronic illness threatens to do the same. Whatever may come, I wish to hold onto myself within it. I want to be solid and real and feel secure in who I am beyond what happens. - [Image Description: Cait is in their wheelchair in a hospital Carpark in golden light from the sunset. They are wearing a retro red and navy jumper with dark jeans and white sneakers. Cait is scratching her head and they look puzzled.] (at Wellington Hospital-New Zealand) https://www.instagram.com/p/Byr2fYtg7Bg/?igshid=1n0yjegndab6c

I have reached an impasse; an edge I’m scared to step up to. It would seem there’s only so much change and adversity and drudgery that I can accept. I’m overwhelmed. I don’t have anymore capacity to accept and embrace chronic illness. It’s happened quite suddenly; just over the course of this week. It’s like it’s all hit me at once, the cold hard reality of the state of my existence. I don’t want any of this. It’s hard and it’s tiring and it’s scary and it takes so much optimism and resilience to live through and I feel like I’ve run dry on those fronts. All through getting to this point I have thought each deterioration was temporary. I thought my pain would plateau and become manageable and I thought I’d just be on crutches a few weeks and I thought the wheelchair would only be around for a little while and I thought a few weeks on liquids only would let my digestive system calm the fuck down and I’d be back to normal. It’s just all hitting me today the true meaning of what drs have been telling me all along — that I’m in for a long journey ahead. I didn’t think it would end up like this. I’ve kept hoping that each treatment would be the last one. I’m exhausted and I’m scared and I hate that this is my life. Sure, getting a custom chair is gonna make life easier and I need to get nutrition somehow and I think I know why upcoming scans have been fast-tracked and I don’t actually want to go there even if I will because I have to. It’d just be so much easier if I could get a job and go running in the rain and eat chips on the beach and have a few drinks on a Friday night and plan our wedding and truly live all life has to offer. I keep my world small so that it doesn’t hurt so much to be reminded of all the things I can’t do but I see it all this week and it feels so unfair. (Image is my art and irrelevant to the text but have no pics and want to share my art here now.) [Image Description: a coloured pencil portrait drawing of a pale young woman with freckles and red hair that has daisies laid in it. She’s laid on grass with her right hand slightly covering her face and her left hand resting on her collar.] (at Wellington, New Zealand) https://www.instagram.com/p/Byo8MaNgyOG/?igshid=f9xnfreyya89