Elsewhere: Writehanded Girl

A couple of weeks ago I wrote a guest post for Sarah Wilson’s Writehanded website. It’s an excellent blog about important health and advocacy issues, and it was wonderful to be included.

Here’s a snippet:

Yes, when I’m clothed and in company, I look pretty darn normal. Pink-cheeked, four limbs, certainly not frail or underweight. But when have those sort of things ever really been barometers for health?

Even the most uninformed people in NZ society are aware of diabetes, for example. The average diabetic will be, well, average looking.The average IBD patient is equally average. Some of us are underweight because our disease strikes our small bowel and we can’t absorb nutrients properly. Some of us are overweight because the diet that we can safely consume without physical pain and internal ulceration isn’t terribly nutritious – or because we’ve been on a course of steroids for months and the puff just keeps on coming. On the street, we’re just one of you, going about our business, because that’s what you have to do when you have a chronic illness – you get on with things, as much as you can, whenever you can.

I wonder if FW would be saying ‘You look pretty healthy to me!’ if he saw the cupboard I used to have that was brimming with colostomy supplies. Or if he went to grab another beer from the fridge and saw my Humira pens nestled between the maple syrup and the kewpie mayonnaise. Or if I had, as I was a little tempted to, shown off my wicked scars, which are still red and raised and some of which still require biweekly nurse visits, some two months out of surgery.

I also have a couple of pieces in the latest NZ Musician magazine – I’ll link to ’em when they go up online.

In the meantime, here’s a new picture of my face.

my face

You’re welcome.

The end.

Hospital haiku. December 4–8.

I trim the stems of
hospital tulips with my
ostomy scissors

Lounging
Medically important lounging photo by Uther ‘Prolific Playwright/Published Poet’ Dean.

 

My plans to blog on the daily were slightly messed around by ill health. After several days in a row of leaving work early due to feeling rather deathly, I finally relented and went into ED on Friday night, thinking that they would give me some fluids and maybe some codeine and send me on my way. But now it’s Monday afternoon and I only just got home a few hours ago.

So to make up for the days lost to a phone-only internet void (and, you know, being hospital-level unwell), here is a selection of random, occasionally drug addled, haiku/short poetry from those lost days.

HOSPITAL HAIKU

I trim the stems of
hospital tulips with my
ostomy scissors

His fingers fly
Writing; counting syllables
Of five, seven, five

The nurse’s glove broke
Latex gave way to warm flesh
Precious skin contact

Mail, Facebook, Twitter
Textual interactions
Words to keep afloat

Tonight at midnight
Lost in an internet blur
I may read Buzzfeed

Arms take turns itching
Fingers one-by-one on fire
Then last are the shins

Pillows that whistle
Every time you try to
Gently rest your head

White blankets and sheets
Lightly patterned white/blue gowns
Pale ghosts at night

I would try to sleep
But I have already and
The steroids say no.

Now waiting, waiting
Free me to the outside world
It’s almost sunny

Orange juice is a
Generous term for this stuff.

The dark and the difficulty

On operations and depression and musical talent wasted.

Sorry, more angst before I get back into reviewing. It happens.

There is a Banksy poster on my wall – The Girl With The Balloon’. There is always hope. I bought it in a lighter time. Now, even though it is opposite it my bed, I rarely notice that it is there. Unconsciously ignoring the message?

Overworked and overwrought; life is catching up on me. Study and work and never saying no to requests for extra hours; trying to create my own things on the side. And on top of all of that, chronic illness and depression, and exhaustion.

It’s no wonder I’ve spent the last three mornings in bed, even if they have been tinged with guilt and a sense of irresponsibility. Like I haven’t earned the right to feel incapable of scooping myself out of bed in one piece without every fibre of my body – both physical and mental – screaming in protest. You need to REST.

Sleep is for the week, they say, and it may be true. Lately, sleep takes a long time to come and in the morning I can’t muster up anything that could be called energy. Yawning on nine hours of sleep. Waking up before alarms go off, but incapable of going back to sleep because the brain is laden down with feelings of guilt and fear and frustration.

I was going through some old word files recently, and found a bunch of ‘what I want to do with my life’ type documents from when I was sixteen/seventeen. Apart from using lyrics from ‘Girl Anachronism’ as my angsty version of Lorem Ipsum when I got off track, it’s so… hopeful. So upward gazing.

“what do i want with my life? what sort of a career do i want? i have no idea. i like the idea of too many things, i don’t love the idea of doing anything, right now. except for crazy impossible things, like tv presenter, radio presenter, scriptwriter, full-time author, actress, musician. artist of all trades. bette-type art gallery person. i don’t know. i will wind up being a teacher, probably. i don’t know what possibilities i have. i just know that i want creativity and recognition.”

I wrote the word ‘skinny’ six times in one document. Sorry, seventeen-year-old self, still not there. I wrote a hypothetical future in which I studied jazz at Victoria and modeled my wardrobe on Vita from The Tiggie Tompson Show and planned piercings at the top of my ear (well, that part I fulfilled).

“Going to be a French speaking, Classical and Artistic jazz musician who also writes. A writer who also plays jazz. I might even be in a rock band. I will have long black hair, with a Karen O fringe, then I will cut it short and dye it bright blue.”

I’ve never been in a band, and I’ve never really played jazz. It seems like my brief fascination with pursuing it was a sort of school leaver midlife crisis. My music has fallen through my fingers and the only instrument in this city is my ukulele. And in stress I chew my fingernails, making strumming more difficult. My flute and my voice have fallen on hard times, and they probably can never be revived to the standard that they were previously held to. Such standards that I held myself to.

That I still hold myself to – but now giving up is the option. If you can’t do it properly, don’t do it at all – and so with school behind me and the only musical options either community based or semi-professional I let it slide away through formerly nimble fingers. Not dedicated enough to my craft for the AYO or equivalent, but too proud to play for a non-auditioned ensemble. And now, so out of practice that one wonders who would have me anyway?

What a tangent.

I nearly ran out of anti-depressants. Yesterday I had one pill left, and I finally worked up the will power to call the GP’s office to ask for a new prescription. It cost me $16 for the piece of paper. I’m nearly at the end of my second bottle of mercaptopruine; I’ve done my fourth Humira injection at home. To think that I spent a couple of months of last year free of all medication (apart from industrial strength painkillers) – how strange and fancy-free.

Soon it will be a year since my surgery, and thinking about that makes break down even more. I was supposed to be fixed. I was supposed to have had the reversal operation by now – I wasn’t supposed to still be smiling and strong and telling people how totally great and normal life with an ostomy can be. Because it’s horrible. It’s better than constant Crohn’s-type hell-pain, but it’s horrendous none the less. Something as simple as wondering where the hell to stash your boxes of supplies – or the fact that going out without a handbag or backpack is out of the question because one needs to always be prepared for an emergency situation. Or the constant gurgles.

I may write positively about it at times, but that’s only because I want to be seen as normal and capable. I don’t want to be this broken girl who fell so low because her body and her mind let her down.

 

curled-up flesh

Pain. Drowning  crinkle-cut curled-up flesh in whitest milk. Obligation lifts the cup, pours it in. No foil-wrapped magic tricks want to have anything to do with it; the capsule sinks below the surface before it can ignite. Flickers as a match might, but with the untiring power of the glowing ember.

No end in sight. The worst days were better, because hope was still cradled that the broken parts could be cut away and mended, dead branches and grafts. But the poison is in the tree and eventually there will be nothing left but dried parts broken on the forest floor.

All the words that a dragged-down mind can label itself with, be labelled with. Anxious. Depressed. Pathetic. Lonely, lonely, so lonely. When I stood alone in drifts of snow in another place, at least mind and body were whole, or still clinging together in the hopes of human unity. The future was allowed to be clouded.

Now I must clutch myself, squeeze my own arm, dig nails into my palms. The crescent shapes do not leave scars, not yet. Record videos intended for a public audience, a forum of confession and reality. Then delete them, because tears are not becoming, not in real life and not in a little box on your screen that you can escape from when you feel uncomfortable.

No one to do the holding, the whispering. Nobody to tell me that I’m being crazy, that I’m more than a foolhardy experiment gone wrong, that my best days aren’t necessarily in my past, that it’s okay, it’s all okay. That I can be loved again, that I’m not ruined by or defined by my body, by my awful, uncooperative, sliced and reconfigured body. Nobody. No one to rely on, to call in an hour of need, no family to go and hide with when it’s too hard to be alone.

Silent nights in a house of extremes – the joyful noise of the happiness of others, going on all around, or the silence that hangs more and more, as the nights close in and nobody else is home. A kitchen untouched – what kind of energy do you think I have? Expend what precious little there is on cooking, when I’ll either be in tears from the blandness, or in tears from the pain?

The pain, the body of pain. The mind draped in it.

 

this whereabouts

I am drowning in implications and connections. I had my first specialist appointment in months.

He didn’t suggest prednisone, so thank gods for that.

But I am back on potent-as-hell medication. New stuff (for me, not for the pharmaceutical world) so perhaps it will work better. And a scope on the cards next week, after which I will almost certainly be going on Humira, as long as I fulfil all of the necessary criteria. Humira, by the by, is the brand name for adalimumab, a TNF (tumour necrosis factor – mmm, tasty)  inhibiting drug that is used in the treatment of rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, Crohn’s disease, ulcerative colitis, chronic psoriasis and juvenile idiopathic arthritis.

Thanks Wikipedia.

TNF inhibiters are more commonly known in IBD circles as ‘biologics’, for some reason. Also, I’ve already been on two of them (infliximab and etrolizumab) before. So, you can maybe understand that I’m not exactly jumping for joy at the idea of this magical solution. And for extra added fun, Humira is self-injected, and by most accounts, is rather painful.

I nearly cried when I was in the supermarket walking through the fruit section, because I really, really wanted to grab some delicious healthy stuff and eat it. But I can’t. I just can’t. I am yet to find a fruit that does not make everything much worse. Fructose is the devil. Acid is the devil. Food in goddamn general is the devil. I forced myself to buy ‘acceptable’ foods in terms of ‘things that my gut can handle’ – and I left with plain white pita bread, chicken, and chocolate biscuits.

My exciting diet, ladies and gentlemen.

The other super great thing (not actually super great) was being reminded, more explicitly this time, about how my intestinal and surgical situation has means that I need to think about ‘family plans’ sooner rather than later. ‘You don’t want to leave until you’re in your thirties,’ sayeth the doc. I don’t want to get all Rachel-on-Friends (per this video), but what kind of a timeframe does that really leave a misery guts of a mid-20s gal?

Combine this with the fact that I no longer have a de facto niece and nephew around to fill my baby-interacting needs, and it’s all rather a lot to deal with.

Fun.

twenty-four and maybe falling

Arriving home in tears, clutching an absurdly large pizza box (full), after sitting on the bus (full) next to various Wellingtonians who all would have appreciated more elbow space than my pizza permitted. Some foodstuffs just aren’t destined for public transport. It was dark (of course, June, poorly laid plans) and the buying of this ridiculously large pizza seemed like a kind of self-flagellating binge – go buy this giant pizza, and then cry about the fact that you have to eat it buy yourself, because there is nobody to share it with. The judgement and raised eyebrow of another person would have helped, perhaps, then voluntary consumption of a slice on their behalf – save you from yourself (god knows that needs doing). But no lights and no faces, a hollow house, again.

I wrote myself out of it, almost. An evening in front of a screen, closed eyes and recollections. It’s alarming to think that the way to escape is in vegetative television or in reliving memories from the mid-nineties. My imagination runs away, building itself into towers before I can catch up, and I am no match for its solid foundations. Susceptibility to words and numbers – names making me miss things, rather than people. Having someone to cuddle as winter sets in (fiendishly strong), having nieces and nephews to snuggle and read to and fulfil of those impulses that I really ought to not be having for a few years yet. Having someone to just exist with, another presence even when silent.

Now, listening to The Magnetic Fields. Love is Like a Bottle of Gin – sure is. The night of my birthday, I had one gin and tonic, nothing special, my usual concoction / an ex persuaded me to stop drinking them for a while, claiming that gin brought me down / but in combination with life/twenty four years/food it broke me down overnight, on what felt like a cellular level. I tried to get up to get painkillers, but it was half an hour or so before I could sit up and move enough to get to the water and pills. I nearly called an ambulance on several occasions, crying. I didn’t know if I counted as an emergency or not. I have kept tramadol and ondansetron beside my pillow every night since.

So there’s something gin-love-sick related in there. The bottle of gin in my ownership at present is Gordon’s, which was cheap option exchanged for delicate memories. My grandfather’s name was Gordon, and there were Gordon’s Gin boxes used for storage in their basement, which I always giggled at, even though I didn’t really know what gin was. I don’t know who lives in that house now; I wonder what happened to the pool table. Next time I’ll try to pony up the dollars for Bombay Sapphire. Yellow flowers sit so perfectly when it has been emptied.

Back to ‘school’ tomorrow. Missing real-life publishy-stuff already, and the fact that I’m pre-emptively stressing about being stressed it not a good sign in the least.  I’m disconcerted by the fact that basically every day I find myself thinking ‘I really just wish I was at work full-time, instead of mere afternoons and Saturdays’. I keep trying to find the energy to write, but it is buried deep, which doesn’t help any of the mood situations. Maybe it will get better. Maybe it won’t. I just know that there is a sense of relief and safety and welcomeness on Willis Street that there isn’t on Dixon. I love publishers, I love wielding the red pen, I just don’t like how much trying to get there is dragging me down.

I reconfigured my room today, so now from my bed I see books rather than my desk – enjoyment rather than work. Maybe this will represent some sort of cosmic mental shift, but I fear that that’s overly optimistic.

It’s hard.

analgesia

It’s as if my body and mind are taking turns with who gets to be angry at me. For a long time, it has been my mind, and it has been irrepressible – and it’s still there, hovering, threatening to break down again, but for now it is the lesser of two evils. Last night, my first night of being twenty-four (fresh start, new ‘year’, you know) I came the closest that I have ever come to calling an ambulance because of the pain. I spent much of the night writhing, crying, hoping like hell that this wave would pass and that I would finally be able to sit up and take some painkillers and anti-nausea meds and hope that they would help.

They did, eventually, but I suspect I only got about four hours of solid sleep last night as a result. My fingers hovered over the 1, I cried and cried and told myself that I didn’t need to, all that they would do is give me fluids and maybe some slightly stronger pain meds. I tried calling Healthline a couple of times, to see what the nurses there had to say, but the waiting time was more than I could handle, and the terrible hold music was making me feel worse. My head throbbed, my whole body was shaking, and my abdomen basically felt as though someone was doing exploratory surgery without any kind of anaesthetic.

Then I woke up in the morning, and went to my work placement, like nothing was wrong at all.

When I had my surgery last year, I went into it knowing that it was necessary, that it was probably ultimately going to save my life. But I also thought that I would see a longer term remission than I have had – if you could even call it that. But last night was the most pain that I have been in since I was in hospital after surgery. Happy birthday, me. I gave up a month of last year to recover from that surgery. I need to have another operation, I know that… I just can’t figure out when I’m going to have the chance to take that amount of time out from my life again without throwing away everything that I’ve managed to piece together. It’s a fragile network, and I feel like I am probably forgoing my own mental and physical health to maintain it.

I try to stay upright.

fears

Tumblr has become my confession box; this place remains slightly more honed. But my most recent ‘yes, this deserves a frenzied Tumblr post’ moment seems to have grown and spread, an idea or a virus. The end result is what will tell the difference, I suppose, but ultimately it is this – what are the fears that are creeping on my mind, and will  writing them out, sending them into the internet (so the world and the ether all at once, audience depending) change anything? Will admitting them in this space lighten the load, or simply provide more ammunition for people to doubt me, and for me to doubt myself?

Only one way to find out.

Here some things that I fear. In moderate detail.

I fear that my best writing days are behind me, that I haven’t improved my craft since I was sixteen. I have not had creative work published since I was in my first year of university, and that was only because I’d been lucky enough to have work submitted by my glorious former English/Creative Writing teacher at high school. I had chances to make the most of noteworthy names in my undergraduate courses – but I was too anxious, too depressed, too insert-synonym-for-terrified to let my classmates see my work, let alone the tutors and lecturers that we had. I passed my stage three prose course with a fairly good grade – but I’m sure it could have been an absolutely glorious grade if I had gone to more than the first lecture and workshop and then had borderline panic attacks every time I thought about going to a class taught by Witi Ihimaera.

On that note, I also fear that if I did find myself accepted into a masters programme (as I have wanted to do since the aforementioned English teacher basically introduced me to the concept of the IIML etc), I would descend into the same I’m-not-good-enough spiral, that I would take all judgements too harshly, that I just couldn’t hack it. Honestly, that sort of fear is probably part of why I decided that I should investigate publishing and editing as a career choice. So that I could think critically about my work from the perspective of the people with the power. So that I could learn what people are looking for when they work their ways through submissions. The contacts and connections that I have made since I moved to Wellington are probably helping that somewhat – I don’t feel like the total outsider to the literary world that I once did, but I still live on the fringe.

I fear that I have shot myself in the foot with pursuing ‘journalistic’ writing in various forms, especially over the past few months. It’s not that I don’t enjoy writing these things, but I feel as if it jeopardises some people’s opinions of me and my work. Yes, I have written reviews, and feature type pieces, and musician interviews – but that doesn’t define me or what my goals and intentions are. My first and foremost love is still prose (and sort of poetry too, even if I won’t admit that up front terribly often). Articles are a way of getting paid to write things. And that’s still rather amazing to me.

Not everything has to do with writing, don’t worry.

I fear loneliness. Oftentimes, since I’ve moved here, it feels as though my connection to friendship is through the internet, and real life is just a place where I work and go to class. I don’t choose for it to be that way, but I’m still so stuck in my ways of the same group of friends through undergrad, and attaching myself to D’s friendship groups – and generally just using the (reasonable) excuse of being too sick (both in body and mind, thanks hindsight) to put effort into things like socialising. I’ve lost my touch, if ever I had it – and the problem is, the people whose company I tend to like most are probably those who least feel the need for another person in their life.

Related to that, I fear my own desirability – both romantically and platonically. I look at myself critically, and struggle to figure out what would draw anyone to me. This is before I even take into account the whole busted gut situation. Sometimes I worry that I’ve thrown myself too far into this book world – it is, after all, all that I’ve ever really known. Music, and words. I know that in theory there is more to me than that, but so often I struggle to come up with anything else. It’s reading, writing, publishing – or listening, playing, singing. Every gerund rooted in decisions that I made many years ago.

I have never felt ‘attractive’. I have always been the pursuer in any potential relationships (not that my backlist is terribly heavy there), I don’t have people paying attention to me in any way. When the fact that I ‘like’ someone comes up (rarely do I let that happen, but happen it has), I’m always faced with a ‘wait, really? I had no idea’. I just don’t know how to show it. I fear that this is something I just have to accept, that people don’t consider me a possibility until I put myself out there, ready to be shot down. It’s what I have come to expect. I didn’t walk away from the three years with Dom and keep my ability to trust people intact.

I fear my body, what it does and what it may not be able to do. This is where things maybe get a bit heavy. You’ve been warned. I have a chronic illness – we know that. It’s not fun, but for the most part, it’s manageable. Ish. But let’s now add to that the fact that at my age my mother had melanoma. One of my medications also makes me more susceptible to melanoma. More recently, she has had seizures and been hospitalised for them.  My father, not yet 60,  has had arthritis for years, has another autoimmune condition (not Crohn’s, like I do) and has also had heart issues. So I come from… imperfect stock healthwise, shall we say. All of this contributes to a fear of my health’s twists and turns. I already get IBD-related arthritic pain, at times. Bad knees are not the domain of one in their mid-twenties.

And related to all of that, I fear for my future. I was an IVF baby. I took eight years to come about. And whilst my two younger siblings then came about naturally, there was obviously something not cooperating that needed to be nudged for things to start happening. Because of the strange tag thing on my ear, Mum used to say that they mixed me up badly in the lab – now it feels a little more self-destructive to say that, since my health has deteriorated. So I fear having a genetic tendency towards problems in the future – not to mention the fact that since I have already had abdominal surgery and am guaranteed at least one more… it all adds up to make things like pregnancy that little bit more difficult. And it’s all the worse to worry about these things when you don’t really have a means to make them happen, anyway. It was one thing for me to wonder about it 6+ months ago when I was in an established relationship – not as something to have happen any time super soon, but something to be aware of.

Now that there’s nobody alongside me, it feels pointless to even wonder about these things, but still they play on my mind.

There are other things, of course – noises in the night, disasters, the usual. I am lucky, I suppose (ha), that I don’t have any crippling phobias of any kind, I can dislike spiders but not leap away from them – I’d flinch if a mouse scurried by but I wouldn’t scream.

But these things, even if they are me wrapping myself in knots, are weighing me down.

drained

So drained. So overwhelmed. All I can think about right now is how I don’t have any pictures of Olive and me together. And now there will start to be pictures of Olive and The New and Horrible One. And that really, really depresses me.

There is something both hilarious and terrible about being in tears for most of the evening while a movie called ‘LOL’ plays in the background (the French original, not the Miley Cyrus remake, for the record).

Here’s hoping my face isn’t too puffy for interactions with Camilla Lackberg tomorrow. Because apparently my current tactic in the Game of Briar’s Life is throwing myself into more work than is sensible.

I miss my darling Lolla. I miss that whole part of my then-life, those evenings and afternoons on the Shore. The first Gecko Press book I ever bought was a present for her. Zou and the Box of Kisses. I organised the presents, then, I made the suggestions. One of her particularly precious toys is a stuffed zebra. So it was perfect.

And now I’m down-country, and there’s going to be a new name tagged onto Dom’s name when he goes visiting his sisters, and it absolutely breaks my heart. More than anything else, in this moment, to be honest . I haven’t yet been able to bear putting up the pictures that I have from her and Felix.

Did you know that among all the rest of the eateries, Cuba Street is home to two cafes that happen to be called Olive and Felix? And remember that the daily newspaper in Wellington is the Dominion Post – AKA the Dom?

Escape in the form of someone new really needs to come and sweep me off my feet with Camera Obscura songs, or something.

distance

Some side effects are not known until they are experienced; nobody keeps a record, because the list would be too long. The side effects of distance present themselves to the individual as time goes by, and all cases are different.

I sat in Civic Square, after everything was established as being ‘okay’. For the time being. I walked behind a tourist family who chattered away, wondering at their whereabouts. The mother noticed the gulls padding around, screeching at one another, and commented that they must be back near the sea.

They were, of course, and yet all I could think about was seeing a lone seagull in Montreal, several months into my time there. Montreal is on an island, but it’s a long way from the sea. It was a moment not unlike the first rainfall that I experienced while there (rain! this is so exciting! it’s warm enough to RAIN!), but a little more emotionally fraught.

Homesickness is a bitch.

But this isn’t about homesickness, not exactly. It’s about difficulty, it’s about frustration, it’s about being in the wrong place – or someone else being in the wrong place, at least. It’s about distance.

I have already written here about how my dad is in Honiara, in the Solomon Islands. Fortunately, it has been a milder couple of weeks for them since the floods and storms and earthquakes of earlier this month. But the worry still exists – the thought that something even more dire could yet happen, while I sit in my windswept but mostly safe house on a hill in this strange little corner of the world I call home.

Then, closer to ‘home,’ yet still far away, Auckland looms to the north. Last night, I forgot to turn off my alarm, and so I woke up earlier than I meant to. In scrabbling to turn the sound off, I saw missed calls, texts. And so, I found out, seven-ish hours after the fact, that my mum had had a midnight ambulance ride to the hospital, and was still there.

Things like that will really reinforce the distance.

She was discharged late this morning, and I had just gotten off the phone to her when I sat down in Civic Square. I accidentally dropped a bit of my sandwich, and was inundated by gulls and pigeons. After the initial furore had died down, I watched them wait in hope, a couple of them clearly in positions of authority as they puffed themselves up and marched towards others, undeserving of this chance at scraps. I went to the library, I went to work, my head trying desperately to keep everything level. We drank gin and tonics at the end of the day, and I caught the bus home, everything still churning, and all sorts of write this down! ideas came and went, but this one was the most obvious one to stick with.

And so here it is. Distance.