Are there precious hopes buried deep inside your soul? Does your inner critical voice crush the tender shoots of your yearnings before they even have a chance to grow?
To answer these questions, I must explore what I most want without scoffing at it. Last week was a hard week; and I lost sight of my dreams. I don't want to admit that I have dreams. It's easier to pretend that I don't, so that in the inevitable situation where life disappoints me, it's not as shocking. Or fucked.
I am allowed to engage in wishful thinking. I am allowed to engage in wishful thinking.
West End has, far back in my memory, had old, old houses with doors fancy as hell. Some are right on the street, hidden by shrubbery, shade-loving plants, or overgrown ivy. And others, in traditional Queenslander style, have doors visible from afar, across a yard with a waist-high fence (of some kind, be it metal chicken wire or white pickets). The doors stand, an homage to the passing of time.
Of course, as the suburb continues along its gentrification journey, the houses and properties adhere to a homogenous minimalistic, greyish, depressingly treeless fashion (where there are electronic speakers blaring out nondescript but grating music from tiered, tightly manicured garden beds*). But, when walking along the terribly kept, mostly narrow pathways (proverbial weeds; trees, roots sticking out of cracks in the concrete), you can still spot different doors every few houses or so.
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Walking while disabled
Let me tell you, the newer pathways (corporate-sponsored) are no better for accessibility than the shitty but loveable old, narrow ones which have grown woefully uneven over decades of use.
It is so weird to me, to be the current version of myself, and to be thrust back into such an unsteady walking pattern again. That isn't very clear, is it? Okay.
When I was diagnosed at 4 years old, I was walking on my toes and only my toes. It had taken me a long time to get used to the upright bipedal way of life, but not for lack of trying. Then, as the years went on and I undertook rigorous physical therapy, I also had many operations to improve my gait and stability. There was a lot of physical pain, and a lot of falling onto the ground. I would give you an analogy, but right now that feels like a waste of time. Suffice to say, I always had scraped knees and bruised elbows. My Nonna kept iodine in the kitchen cupboard with the analgesics to disinfect the perpetual wounds on my palms. See, I'd use my hands to break my fall each time, and I had two symmetrical wounds in the hearts of my palms, left and right, like accidental stigmata. Unlike the simpler cuts and bruises, these wounds didn't close up for years, and eventually became infected; I had to go to the doctor for medicine to 'fix' the problem, but the doctor said that as long as I was using my hands to break my fall, it was unlikely that the infection would heal.
The problem was that, because I tripped on my toes a lot, I was always falling forwards, not backwards. And the only way to stop face-planting was to use my hands to break the fall. Childhood lasts a long time, doesn't it?^
Eventually, I was wearing these bulky bandages to cushion my hands during the day, and only took them off at night to sleep. The wounds had time to rest, no longer being directly assaulted by gravel, bitumen, concrete or dirt. Nonna kept the iodine just in case.
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Oh how the times have changed
Did you know there are no pictures of West End at night (that are free for me to use on this blog)? I would go and take pictures myself, but I'd need a support worker to come with me, and I'd need confidence and maybe a different set of life experiences, but that's just life, isn't it.
As an adult, my walking was so good because of all the work that I'd done, alongside my parents and grandparents, surgeons and treating team, to improve my gait. I didn't fall often. But that's changed, because my ankle had other plans.
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Grief is a funny thing. If I had a whole lifetime--and I do--there would not be enough time to unpack it.
Where were we? Ah. Yes, the recent days. So, I was in West End the other night for a thing with some friends, and a bunch of acquaintances as well. And, it's been years, literal years, since I have walked the streets of West End. Actually that's a lie. It's been 18 months (but 18 months and a car crash and a broken ankle will get you somewhere completely different to just 18 months and no bloody car crash; you'll feel it).
These friends of mine, they're not faint-hearted people. They've been around a while. We've gone through fashion trends, heartbreaks, dance battles, tragedy, birthdays, deathdays, highlights and lowlights, betrayal, survival, picnics, alcohol-fuelled love affairs etc. Just a lot, okay? But my walking in all those years was not what it is now.
We used to walk the river some days. We'd go all the way from the city across the bridge to South Bank and onto Boundary Street to go to the book store or the pub. We'd walk blocks and blocks of busy Brisbane streets, no worries. We'd walk from my house to the park and back to my house again. We'd go on the back streets to my favourite Vietnamese place, up the steepest incline in the suburb, and, tipsy after dinner or a gig, walk back the way we came. After all my childhood operations and consistent physical therapy and exercise, I'd fall a lot less. And, I'd fall mostly at home and never in front of people, unless I were drunk.
My stride was sure, and I was incredibly confident in my own abilities. And then the car crash. So, a few nights ago, in shoes that didn't feel that great but were incredibly sensible, and in the midst of a semi-cold Brisbane night, we walked along Boundary Street in the dark, with only streetlights and shoplights to guide the way. My steps painfully slow, my voice unsure, and my (well-cursed) thoughts in a pattern of self-recognition, self-hatred, and concentration. I haven't experienced that level of slowness in front of acquaintances in years, and it was the first time, ever, that I'd walked the main street of West End in such a state.
It brings to mind a level of loathing that would probably be hard to fathom for the average person. Indeed, it is hard to articulate (and very rarely acknowledged or understood by those around me when I talk about it openly--why, I don't know). My friends, God bless, are very patient and generous with their time, their support. But, only having met in adulthood, they've never really seen me struggle like this.
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Get a taxi home or whatever
On the way back home from the evening, I was on the threshold of panic. What was wrong with me? Why was I so upset, embarrassed? The worry of walking, the literal worry, creates in me an anxiety and fear that is easier to conquer when I can have verbal reassurances form others that I'm doing well, that I'm not going to fall, and that they will be there to (literally, physically) help me.
Some months ago, when I was still using a wheelchair to mobilise, I had a lady, a near-stranger, tell me I was brave and sooo good to directly tell people what I needed (because, she said, she could never do that). We were at pottery, and I had asked a fellow student, Jan, if I could borrow her tools, and if she could bring me a mug of water. Everyone at pottery who knew me was explicit in their offers of assistance, but I was new to this group and the stranger (by way of being a stranger) didn't know me at all. I replied to the stranger, explaining that it was neither brave nor, as she put it, an indication of my confidence and 'goodness.' As if asking for things that you need--basic, essential needs--is a skill to be worked on. For me, it is a necessity of life.
When I was a child, my needs were unique in that they were the needs of a child with disability. Meaning that the average adult who hadn't come across a disabled kid had no idea what I needed or wanted. They had no idea why I was crying or if I were in pain. I learned to doggedly request things that I needed. I learned to ask 'why' a lot. I learned to speak loudly and often, because if I didn't, most adults would forget that I was slower, prone to falling, at greater risk of drowning. Some adults (and I won't name the ones I remember, because let's face it, it wasn't some adults; it was most adults) decided that I was asking for things just to be difficult, contrary, or selfishly divert attention away from other, less troublesome children. They actively denied me assistance, not to be cruel, but, as was the way for so many children, to teach me a lesson.
What did they teach me? I'm sure it was many things--too many to satisfy you at present. But, back to this lady at pottery. No, asking for things is not a luxury, I told her. She said she admired my outlook and wished that she could do the same. I didn't tell her that this approach of mine came only after ages of trying other things that failed, at the hand of a great and miserable mystery. That adults, teachers, relatives, and others (much older and stronger than me) went to great and ignorant lengths to reprimand me and publicly humiliate me so that I would learn the lesson.
I ask for things so directly because I need them, simple as that. After years of repeating myself, of being confused, being denied, and feeling ashamed of myself for needing extra things that non-disabled people don't necessarily see or understand, I have a habit of stubbornly ignoring the whitehot shame, guilt and grief I feel at having to ask my closest friends and loved ones for physical assistance. Now, people might tell me not to feel that way anymore, that they 'get me' or that I'm okay now and I'm allowed to have needs. Often they say they could never tell that I was having such a hard time navigating this endlessly inaccessible community (yay, narrow unkempt pathways).
Not enough love is given to the observant people who see that I need help, and do the task without drawing much attention to it. I'd much prefer to do things for myself, just so we're clear. But, when required (which is more often these days), I ask for what I need. Most of the time, it's something little that might seem inconsequential to you. The most obvious one is Can we please slow down? when we are walking together, or Can I hold your arm? when walking on uneven pathways, especially at night.
You might find this jarring and awkward at first. But, please don't. It's not special. It's part of life.
*electronic speakers! buried among plants! what have we come to? what about the plants' own language?
^whoever says they want to go back to being a child probably didn't experience much emotional turmoil when they were little (disclaimer: that's just a guess; i'm not the authority on other people or their life experiences)
"Capitalism mobilises its agitators as vehicles for its proliferation. Drawing on an advertising and technology industry that scours the social world for images, movements and experiences yet to be commercialised, capitalism's 'creative edge' leaches any possibility that these could be utilised to create alternative social worlds. Any movement (be it countercultural group, protest movement, meme or activist ideology) that is looking to destablise capitalism is viewed as a potential market to exploit."
-- Oli Mould in Against Creativity, 2018
(Image description: Brown grass fields, rolling hills, mountains in the distance)
My mother wants me to write; my sister wants me to write. If I could write, I would. But if I did, they wouldn’t like the result. The platitude is “Write what you know,” which, if taken literally, truly is bullshit.
Write what you want. Most of all, don’t write from life unless you have warning stickers and hazard signs on your business cards, your car, a necklace hanging around your neck at all times. Walk around with a cardboard placard that says Hey I’m gonna write about you and guess what? You’re not gonna like it. Everybody thinks they want to be immortalised in one way or another but the truth of it is that nobody wants to see the kind of mirrors that writers hold up to the world.
(Image description: POV you are standing inside an darkened room, looking out onto the marble facade of the building. There is a glass-panelled door with geometric signs, half open. Sunlight is streaming through the door in one clear pathway. There is the silhouette of a stranger walking away from you.)
I have a friend
I have a friend who vehemently hates bats. Why? I can’t recall exactly; suffice to say it is a silly reason and she should be condemned for such a stance. I have told her as much.
Going to the hairdresser as a form of self-care
Life is such a confusing sequence of events. When I am confused, that is how you know that I am sad. The two often go hand-in-hand. Often, I am sad because I am confused, or, I am confused because I am sad---this is just an aside, with perhaps little relevance to hairdressers or hair in general.
My mother treats the hairdresser as self-care. Self-care was invented long before the phrase was popularised, I would posit (but nobody can tell for sure). I never really liked going to the hairdresser; hate to have people in my personal space. What is that about? (You may ask.)
Well, if I were to guess, I might say that it has been ~years and years~ of me enduring randoms in my personal space. All up in my grill. Stretching my spastic muscles, moving my unwilling flesh. It’s all part of the weird, weird thing called ‘self-care’ and ‘self-maintenance’.
I realised yesterday, too late, that without my daily exercises I am all but useless to the world. It is a sad fact. But as Dad says, everything takes work. God I’m moody today? It’s a lack of sleep---don’t worry about me. The questions I may ask include:
How do I talk about my disability without sounding like a sad sack?
How do I express my disdain for daily exercises without buying into ableist notions that my disability makes me a burden on society?
(Image description: Two lounge chairs and a coffee table, out in a terraced, undercover garden.)
Revelations at the physio
Actually, I had a really useful conversation with the physio this week. About how come the label of ‘disabled’ is useful to me, psychologically.
I no longer like it when people tell me that they don’t see me as disabled. This is not just a me thing. This is a common story many disabled people tell. Is it fashionable for people without disability to tell disabled people they don’t see disability? I’m not sure tbh!!! But there sure are a lot of people saying, ‘Oh, I don’t view you as disabled.’ Or, ‘I didn’t notice you have a disability.’ And... they say it as a compliment .
Now, you may not know this about me, but I love compliments. Can’t get enough of them. Love them. Endlessly. And I don’t want to condemn people who are just trying their best to be kind. After all, it is a common belief that the worst thing that could happen to you is disability.
Let’s look at this syllogism for a minute:
Everyone who has a disability hates having a disability
This person has a disability
This person hates having a disability
And now, this enthymeme:
Many people with disability enjoy compliments; therefore if I tell them they don’t seem disabled, I have given them the perfect compliment.
The unstated premise in this enthymeme is that having a disability is inherently bad.
I am not here to argue for the moral or ethical implications of this premise, or the resultant ways it affects attitudes towards disability and disabled people (although I will say that it doesn’t fill me with the warm-fuzzies of You and Your Disability Are Welcome Here). Such things are secondary to the pragmatic approach I find necessary to perseverance in my everyday life. The question that I ask myself is, often, ‘Is this idea (or thing or activity etc) useful to me?’
And, these days, such a compliment is not useful to me in the least.
Why is it not useful? If my identity is formed by the feedback given by other people, and they don’t see me as disabled, then I am not disabled. And, if I am not disabled, then I do not need to do my disability-specific exercises.
Dad says that everyone has to work at self-care (except he doesn’t call it that) to make sure they stay alive. But I’m different in this way, because the exercises I have to do are only achievable with the help of a second person. They are different from non-disabled people’s exercises, because most of those (if not all) can be done individually and without assistance.*
Do you see where I am going here? Is it coming together? If I don’t seem disabled to other people, then either I am not disabled or my disability isn’t that bad (and if it isn’t that bad then I don’t need to do my exercises).
However, I have learnt that even if other people say these things to me (things which they think are compliments; things which they think are good to say), listening to and believing statements such as this impede my ability to take care of myself.
(Image description: An indoor, dilapidated bench-top covered in pot plants. Pot plants also line the floor. There is a bowl of fruit in the left corner.)
What works for the individual may not work for the whole
So when I was at the physio this week, we were talking about the general usefulness of random people telling me that I don’t seem disabled. And the conclusion we came to?
If you want to tell me that I’m not very disabled, or something of the like, that is your prerogative. But, it is not---in any way, shape, or form---a good thing to hear. In this circumstance, good means the same as useful. Why is it not good? It shows a level of (sometimes well-meaning and/or blissful) ignorance of disabled people’s true lives.
Why is it not useful? The idea that I’m not very disabled implies, to me, that I don’t have to do any particular kind of work (any exercises) to, as Dad put it, stay alive.
Over the past year I have gotten into some life-threatening situations because of the status of my physical body (car crash, stitches, concussions (and brain injuries), broken bones, pulled muscles etc.). And the work I need to do to improve my odds of living is specific to my disability. This work will, according to all health professionals involved, improve my physical wellbeing, my strength, balance, and proprioceptive receptors.
While I can acknowledge people’s attempts to give compliments, I must also consciously recognise that those compliments are not useful to me or my successes. Am I disabled? Yes! Am I disabled enough to need to do exercises? Yes. So do the damn exercises. Do them every day.
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*Additionally, people are encouraged into sport as a past-time. Touch, football, netball, tennis, running, cycling, swimming? All of these require a base level of skill or practice, and team sports as a disabled woman (unless it’s specifically a disability-category sporting competition or league) are difficult for me to embrace. My apprearance is such that I don’t seem disabled on the surface, but as soon as you put me in the team environment, I am shunned or patronised by teammates, coaches, and sporting organisations.
(Image description: Tumultuous deep blue ocean with lots of foam, POV directly above, looking down)
Recovery diaries
Did you know that when you quote something, a blog or a journal article or something, when referencing it you need to use the exact formatting of the title? That is why (in case you were wondering), when I write titles, I don’t fill them with frankly absurd capitalisations.
I have an appointment with the surgeon at the beginning of April. Sometimes I wish I were still in the rehab hospital. I miss the nurses. And the surgeon would come to me, rather than me going to him. He looked at my scans the other week and said he was very pleased with my progress----how fabulous.
The plan is to travel with my Dad to see the doctor. I have to use the wheelchair because I am a ‘falls risk’ whatever that means. I think it means that according to the OHS standards of the hospital, and the fact that the treating staff didn’t want to undo all the hard work completed by the surgeon in my near 8-hour operation, there was a high percentage that I’d fall over and damage my brand new ankle. Why? Because of my cerebral palsy, that’s why.
So I’ll be using the wheelchair and various walking aids probably for the next couple of years----I’m guessing----until my cerebral-palsied-arse can get with the times and let me live my life with my newly arthritic ankle, which is as stiff if not stiffer than my (heavily impacted by muscly tone and spasticity) right ankle.
My balance has always been nefariously difficult. Like it’s a separate person trying to bawk me at every turn. I honestly don’t know what else to tell you.
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(Image description: A red-brick wall, weathered with time.)
Crying in the back of the car
Nothing gets me going like a good cry. I can really let it out lately because I have a lot of physical pain and therefore a relatively good excuse (yes, isn’t it terrible that in this, the year 2022, I still feel the need to insert the concept of needing an excuse to cry, as if crying isn’t a natural human response to things, as if crying is something shameful. It’s not shameful; it’s part of life).*
Once it’s started, the tears just keep on coming. I’m moving from Silent Tears Boulevard to Sob City pretty quickly (this is, in all likelihood, because my ancestors have a talent for crying. Our tear ducts might be specially designed to be extra efficient. Like, ‘Oh you want to turn the tap up Nina? No worries babe, I got ya.’ And I’m saying, ‘No!! Turn the tap down. Down, damn it all to hell! No. More. Crying.’ And then I just give in.)
Crying can be cathartic, don’t you think? Actually, in recent years, there’s information to say that crying can actually be good for you (for a number of reasons). I can cry for hours and hours, non-stop. Anyone who doesn’t know my Mum would find this worrying. But, as Dad says, you just have to know yourself well and accept yourself for who you are. Or, as Mum says, ‘Sometimes it’s good to cry.’ She mostly says this though when she’s watching a sad movie or episodes of Buffy that make her feel nostalgic.
*Let me just note though, that some people, upon witnessing tears, do not react very kindly. In fact, they may have an adverse reaction. Like a kid with a peanut allergy. Quick! Where’s the epi-pen?
/
(Image description: A set of terraced apartments, leading up to the sky. The colour scheme is mostly blue and white with little red accents on some of the balconies.)
Why can’t I sleep right now?
Did you know that our attention spans have lessened with the advent of the smartphone? Look at this one, from a while ago. And maybe go read some Cal Newport, Susan Maushart or Susan Greenfield.
Me, tonight? I can’t sleep and I don’t know why. It could be the physical pain. It could be that I had a two hour nap today. It could also be that no matter how much I write, I always want to write more. But I find a problem in this age of information-overload: the brain is insatiable for more. More of everything, but for me mostly, more information. More about anything and everything that I may find even the least bit fascinating (remember that I am immobile most of the day unless I have assistance from another person, so perhaps that’s why my brain needs occupying).
The concept of writing into the void is so old. Blogs are passé, unfashionable, and not at all in vogue. Why would I want to share something that is so not-fashionable? I don’t know, maybe I’m lonely. (Yes, I do know actually; I am very lonely). But loneliness, like crying, serves a purpose. Me I don’t know what that purpose is, but I’m sure to figure it out. People say that kind of shit to give suffering meaning, to ascribe meaning to a thing without nothing. Spoiler alert: it doesn’t always work.
What I do know is that if I had my animals with me, life would be so much easier. Coping with the world and my lack of physical activity would be easier. But the world is not a fan of animal companionship. I don’t know a way to dress that up or make it funny, because it is not funny and no amount of pretty clothes will distract you from the fact.
While smartphones and related mobile technologies are recognized as flexible and powerful tools that, when used prudently, can augment human cognition, there is also a growing perception that habitual involvement with these devices may have a negative and lasting impact on users’ ability to think, remember, pay attention, and regulate emotion.
‘Smartphones and Cognition: A Review of Research Exploring the Links between Mobile Technology Habits and Cognitive Functioning’ by Henry H. Wilmer, Lauren E. Sherman, and Jason M. Chein
(Image description: Long view of a series of mountains, fog in the foreground and in the sky. The image is cool-toned and portrait-style, with lots of greys and white.)
Awake in the middle of the night with aching adductors and kill-me-now quads. If anyone ever complains about their bodies again (anyone being me), it will be too soon. What the doctors don’t tell you about recovery is that it’s a pain in the arse.
What else they don’t tell you? Umm… I can’t think. I can’t think because of the amount of pain that I’m in. It distracts me from all else. When muscular, tendon, bodily pain like this emerges it’s a sharp pang (cue the pangs in Hamlet’s Soliloquy). And having a conversation? Well, I can do it if you want me to, just please don’t expect me to make any sense. I get from my friends sometimes—but rarely—the question, “What is it like to have a disability?” I can’t tell them.
I’d ask, “What’s it like not to have a disability?”
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(Image description: A polaroid photo of red wildflowers, out of focus. The left half of the photo is smudged with gold glitter.)
An arduous and climbing journey
I used to treat poetry as I treated breath: essential, immutable, inseparable from my existence.
As always, for the purpose of treatment or alleviation of symptoms, the doctors ask me what it is like; my parents ask me what it is like; and my friends rarely, if ever, ask me what it is like. Why is it important to know the extent of my pain in order to treat it? Between 1 and 10, the pain in my hip flexors (right side) at the moment is a 9. I would say 10, but according to the nurses from my most recent hospital visit, 10 means you’re on the brink of death.
I want to say the pain is a 10 because it absolutely is, and because I feel on the brink of death when, in the middle of the night, I wake up to the spasms.
Recently, I discussed with a neurologist the benefits of having poison injected into my body to alleviate the pain. He said there wasn’t a muscle in the body you couldn’t Botox. He, however (like many doctors), has not done every muscle in the body, and thus is loathe to try.
(Image description: Mountains, the one in the background is orange/red, and the one in foreground is a very weathered blue and green.)
Being awake in the middle of the night lends you to all kinds of mischief. The kinds of philosophical mischief that, in ending, achieves the ultimate goal: distraction from pain. I don’t know why I’m writing this the way I’m writing it. It’s almost as if diaries, like people, are multifaceted and nuanced and sometimes hard to read.
It’s hard to get a grasp on my true meaning when I’m mercurial like this. Does it mean the writing suffers? Maybe.
re: tht candace bushnell quote. i love that writing is such a democratic, affordable art form. but if someone says ‘im a violinist’ then they pick up a violin and can scarcely squeak out ‘three blind mice’, they are manifestly not a v good violinist. it gets murkier w writing lol
— spooky spice (@jenniferdown)
February 16, 2022
I’ve yet to find a useful, least-harm, long-term treatment for the physical symptoms of my disability, and I suspect that it is a fool’s errand. But people don’t want to hear that. There is always hope, they say. And I’m not saying there isn’t hope, not at all.
I want to be allowed to hope for other things. I want to be allowed to accept my body for what it is. Going to try to go to sleep now. Might do that, or might write some more.
/
*(Descritption of tweet: Tweet that says “re: tht candace bushnell quote. i love that writing is such a democratic, affordable art form. but if someone says ‘im a violinist’ then they pick up a violin and can scarcely squeak out ‘three blind mice’, they are manifestly not a v good violinist. it gets murkier w writing lol” from @/jenniferdown on twitter.com.)
It’s okay to express your emotions (in a healthy way)
(Image description: POV you’re standing inside an old greenhouse, at the foot of a built-in pond. In front of you are very tall, glass-paned windows and columns and pillars with dark green climbing plants.)
Please, if you’re not interested in bodily functions, this is your warning now.
Mum is sleeping in the bed next to me and I am, as she says, typing furiously in the middle of the night. Do you remember when blogging was the big thing that people did? These days it’s videos and the algorithm and social media, but my memory is long and I’ve always loved to read.
I went to see a kinesiologist the other day, since my old friend and naturopath is currently out of town and I have a raging candida situation in my microbiome. You might say, ‘Oh babe, go see a doctor.’ Don’t worry! Not at all! I am seeing a doctor. I am in fact seeing many doctors. As I said, the situation is raging and it’s kind of turned into a rave-in-my-body for so many different medications. Put two and two together please love.
The kinesiology appointment was, for me, a useful experiment. She started off by explaining kinesiology and then telling me that she would not put her own opinions onto me during the session. Fascinating statement to make. She then, throughout the next 90 minutes, told me all about her life and what I ought to be feeling and thinking. A kind-of repackaged CBT for dummies mixed in with alternative new-aged salt therapy promotion and a ‘think yourself better’ attitude. You might be able to glean, absolutely not my cup of tea.
/
(Image description: Interior. Unmade med with white and grey linens. Four pictures of birds hang above the bed, and there is a curtain to the left, presumably open.)
I am worthy of love and affection
Regardless of my personal feelings on the matter of positive psychology and toxic positivity (is the word ‘toxic’ is overused?), the fact remains that when you give compliments to a plant and say loving things to it, the plant flourishes.
“The more we try to avoid the basic reality that all human life involves pain, the more we are likely to struggle with that pain when it arises, thereby creating even more suffering.”
--- Russ Harris, The Happiness Trap
There are so many useful quotes from Russ Harris’s books. I wish I had an expendable income so I could buy them all and re-read them over and again. I mean, overdone and corny? Yes. But useful? Also yes. And there’s nothing more I need in this life than useful philosophy. Or useful, plain-English psychological theory.
The kinesiologist was very into the affirmations. There are connections between the feet (both of mine are wanting at the moment), a feeling of being stuck, a feeling of lack of worth, and the overthinking. She had three or four affirmations, stacked on top of each other, that are relevant to my microbiome atm. None of this is new to me. And, nothing is in my control (not even my Mum’s snoring).
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(Image description: Close up of white and yellow flowers basking in the sun.)
Control and surrender
Acknowledge and appreciate [your] efforts, and give yourself a pat on the back for what you did right. This is absolutely essential for self-encouragement. It’s not enough to merely unhook from all our harsh criticisms and self-judgments; we need to actively appreciate our efforts, especially when we fail to achieve our goals.
--- Russ Harris, The Confidence Gap
Is control on a spectrum? Is surrender on a spectrum? If I were to use a binary system, would it be between control and surrender, or control and chaos (something similar)?
The rule of three not an exact constant in my life, but still strong enough to make an appearance at opportune moments. It’s times like these when my brain is asking these questions that I wish I knew more Descartes or that my ability to remember quotes from literature was not limited to Oscar Wilde and my recollections of Dublin’s parklands*.
Here are some things that I wish which may not be fulfilled, and so at this point remain futile: to sleep in my own room and turn on the light in the middle of the night; to sleep through the night; to manage my pain in a socially acceptable manner (impossible); to be listened to and heard; to understand what ‘an invitation’ looks like.
Part of me feels that all of this is brain nonsense and so, unworthy of attention. But truly the wisdom comes in speaking to myself and listening. Speaking, writing, listening, and letting be. Courage, empathy, compassion, acceptance, willingness and hope.
/
*Thanks for reminding me of the inherent privilege of my existence
The fact that you can act with love even when you don’t feel love is very empowering. Why? Because whereas the feelings of love are fleeting and largely out of your control, you can take the actions of love anytime and anyplace for the whole rest of your life.
In December 2021, I accidentally broke my talus, which is a bone in the ankle. This website is a record of my recovery, including:
Time in hospital
A way to pass time while I am off my feet for around 8-12 weeks
Some new and interesting information about the talus
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Acknowledgement of Country
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Disclaimer
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Talus Negotiations is the intellectual property of the author. All content is completely original; any images, gifs, videos and content sourced elsewhere has been referenced and, where possible, the original creator cited. Given this is a memoir-style blog, the content is original and for entertainment only. Any similarities to real-life events and/or people is purely coincidental. Any resemblance to stories, novels, scripts, books, or any other published or drafted media is purely coincidental. While the content is based on the author’s real life experiences, all efforts have been made to protect people’s identities and respect privacy. Content can be changed or updated at any time, at the author’s discretion. Talus Negotiations reflects the author’s personal opinion only, not that of her employer or other organisations.
I have a thing that goes into the inbox. You’re very welcome to subscribe to the newsletter.
It’ll come to your inbox about once a week and it’ll be fun but also gruesome.
Tips!
It might go to your junk inbox, so check that too.
Why?
The blog is my place to be free as a damn bird. Or as free as a bird can be in this day and age. The newsletter is to update my friends and family (and anyone who’s interested lmao) of my recovery news.
The newsletter features a lot more about rehab than the blog.
(Image description: An open air-market. POV: You’re looking at a crate of lemons with the label “Unnamed Lemon $6.99 (GBP) per kg).
I know that the stereotype of the lemons could lead you to Beyonce or the old When life gives you lemons but to me, lemons are golden. Not the sour. Not the idea of a car as a ‘lemon’. But lemons as enriching, flavoursome, deeply nuanced and provocative. Lemons as comforting.
Food is and always has been the giver of life. Food and sunshine and water and love. And shelter and community. Those six things. But most of all, lemons.
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Today, I spoke with the surgeon who operated on my talus: a 1-week check-in after arriving home, to see how the wound is. Just how the wound is, he reminded me. Nothing else of any nature, nothing social or psychological, and certainly nothing to support my. ‘move’ into rehabilitation outside of a hospital setting, apart from, he said very explicitly, clinical questions regarding my wound or operation-recovery rules. This surprised me, not because he is British or a surgeon, but because he is a very warm person with an (obviously) large and beating heart.
‘But,’ I said to myself, ‘all people must have their boundaries. And he’s articulating his.’ Then I thought, ‘As if that makes him feel better.’
See, if you’re a surgeon---I’m guessing, given all my experience with them omg lol---you’ve got to devote a certain amount of brainspace to your craft. So, none of this dilly-dallying about with stuff that’s inconsequential to the clinical result. The operation, the mathematics of bones and innards and muscles and things, is what he needs to focus on. That, and his own wellbeing, his family, his community, if he has cultivated one. And I’m incredibly lucky to have had a surgeon such as him, a dedicated, well-reputed, and obviously caring person, operate on me.
(Image description: POV: looking up at the domed and painted ceiling of one of the majestic buildings of Rome, Italy)
20 December 2021
You obviously weren’t there to witness, so I will tell you. When I was wheeled down to the pre-operative waiting area (honestly, what fun, the nurses there are always so chirpy), he spoke with me about how he had spent hours and hours pouring over the scans of my bones. Not in a bragging way, to prove that he was great or to supplement his ego, but as a preface to explain just how complicated the talus break was. A grade four break. He was going to try everything he could. He didn’t know what he could do; he was confident in his approach. It could be a 4-hour operation. It could be a 7-hour operation. He truly didn’t know. He wanted me to be aware of the risks, he said.
This was not the usual pre-op convo I’d had with surgeons. Most of the time it was jovial reassurances and a bit of joking about how I’d soon be asleep. Surely you don’t want to know just how many operations I’ve had. Surely that would bore you.
Strange though it was to me, I really liked him for this. To be frank yet gentle. What a skill.
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He explained, post-operation, the details of it all. How he had to break a bone on the other side of my foot to get through to the talus. How it went a lot better than he was hoping for. How he was confident that my recovery could be positive, but that it would be long and arduous and a lot more difficult than the average talus break. He said the damage to my bone was so severe that (I forget the medical term for ‘bone debris’) within 12 months, my talus may disintegrate into nothing. This would mean that the hinges of my foot are too damaged to actually function and I might experience little-to-no range of movement in my left foot as a result. We wouldn’t know until the 12-month mark.
And, even if the avascular necrosis didn’t occur, I would have excruciating arthritis as a result of my injury. Unavoidable he said, and in many areas of the foot, he said. On a side note, did you know [redacted fact about the accident because the insurance company told my father---I was unconscious for this part---but my father didn’t tell me and you know what, care accidents suck]?
To watch the surgeon work was to witness a miracle, I am sure of it. For him to be honest, again, honest, about the things that went well, and the absolute things that I would experience no matter what. What’s that called? A difficult conversation? Honestly, I was proud of him (a complete stranger to me, someone whom I have no business being proud of). What a time.
(Image description: A painting. Anne Vallayer-Coster, Bouquet of Flowers in a Terracotta Vase with Peaches and Grapes (details), 1776)
And then today
I enjoy putting the time on things. Today, yesterday, last week. Recently, my friend told me that we rebuild memories each time we recall them. What a pain in the arse. That’s why writing is fabulous. Wouldn’t you say? Things, happening, and then, writing them down. What larks.
Things are going well with the wound, thank Christ. Gotta remove the dressings, he said. Gotta let the wound air. Can’t go into the ocean for at least 3 months post-operation. That leads me to 20 March, 2022, which is too far, I know.
The reality is I don’t know how my recovery will go. And I keep thinking, whenever someone says 3 months, or 6 weeks, or 10 days, that it means 10 days from now exactly. I’ve got to learn though, they don’t mean that. They mean three months from that day in December. six weeks from that day in December. Again, pain in the arse.
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The surgeon called me ten minutes before my appointment was meant to start. And the phone call lasted (let me check) six minutes and fifty-three seconds. For a man who has so much time to look at the scans and talk about risk, for a man who can stand long hours in an operating theatre, I suppose a six minute call is sufficient.
I mean, at this point, who could blame him? He has put a lot of work into this foot. And he will continue to see me as my recovery goes on. As I have said before, and as I will continue to say, in the simplest of terms, rehabilitation from a surgery is very, very different to living with my disability.
If we want to get technical, one is chronic, and one is acute. And all those people who have time to look at scans and give you meds and get you out of that hospital bed in an acute or rehabilitative situation? They have time for that, just at the cost of thinking about the effects that the recovery might have... upon the rest of your life.
Patiently educating a clueless white person about race is draining. It takes all your powers of persuasion. Because it's more than a chat about race. It's ontological. It's like explaining to a person why you exist, or why you feel pain, or why your reality is distinct from their reality. Except it's even trickier than that. Because the person has all of Western history, politics, literature, and mass culture on their side, proving that you don't exist.
Day of the baptism of little Eleni (who we’ll just be callng EJ from now). Very interesting morning. Mum and Dad had to clean up a coffee spill in the next room. I got up and showered as soon as was possible. And then it was all stations go.
What’s in a baptism?
Choosing to baptise your kid in this day and age is controversial. But tradition is a thing in both EJ’s parents’ families. And it’s a special day to celebrate the fact that she is here with us (even though you can also celebrate this on her actual birthday).
EJ was dressed in the same baptism outfit my sissy wore when she was baptised a few decades ago (as is tradition, the passing on of the ‘sacred’ ). What is the baptism for, you ask? It is many, many more things than just a general indoctrination into the religion. It is a welcoming into the family, or a debut into the world. If not for the COVID, there were going to be 100+ people at this event today. Other things a baptism can be for:
Welcoming the baby into the community
Celebrating with as many people as possible*
Having family and friends come from all over the country to meet the baby*
Taking photos with the whole family present (a rare occasion if you come from a big family)
Letting each and every person who is there--to celebrate the baby--bless the baby in their own way
And, most importantly: the fashions. She was dressed in the lace and small gold momentos she’d have for the rest of her life
Food and other delights
The food was fabulous. A combination of Greek sweets, Italian antipasto, and a lot of deli kind-of stuff. Like, EJ’s Dad has a huge family and those who could come delivered all the traditional sweets you’d find if you grew up Greek. I grew up Italian so I knew no matter what, no matter that this event was so much smaller and there were many people ‘missing’ (as in, due to the pandemic, EJ’s parents had to cull the guest list to immediate family only; we were in full mask-wearing, hand-sanitising, social-distancing mode), we would still be celebrating this little girl and we would have a lot of good food doing it.
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*COVID means that this is not viable. Otherwise it would be completely normal in my family and circle of friends.
