Welcome to Armchair Rebel: chronic reflections inspired by life in the slow lane. I hope you’ll feel seen, and find comfort and community here, whatever your current state of health or ability. Disability is the only minority anyone can join at any moment, and that each of us will pass through in our lifetime. That’s not a threat, that’s just how it is.

I’m doing a bit of decluttering, or trying to.

I’m staring at a pair of tile nippers. They are professional quality, from the Master Tiler’s Association shop, rather than the local big box hardware. They are heavy, designed to cut stone tesserae for mosaic work. Expensive, as is only reasonable, they are not exactly beautiful, not ornamental in any way. They look like they exist to do a job, and do it well and reliably through thousands of iterations.

Only in my imagination are they looking at me reproachfully.

🌿

I bought them in 2020, for an online hands-on mosaic workshop. For several years, since my twin’s death, my birthday present to myself has been a craft experience or short course. A way to learn a new technique or try my hand at a new craft. Something just for me, something that is a want, not a need, that I can allow to be frivolous.

Between booking the workshop and the day of the workshop, I fell sick with the worst flu of my life.

The tutor kindly cut up my tesserae ahead of the class, so that I only needed to trim them a bit, as I knew I would not have the strength to grip and squeeze over and over for a couple of hours. Even so, I was unable to complete any of the mosaic samples as everyone else did. My hands shook then spasmed, my arm muscles twitched and let go, exhausted. My vision blurred from looking at the zoom screen.

The nippers have sat in the storage box with my other mosaic paraphernalia ever since, waiting for the day I am well enough to use them.

2,007 days, so far.

🌿

The matte steel is a chill weight in my hands, cradled in my lap. Regret and nostalgia claw up from my stomach into my throat, like a bird caught in a chimney.

I have a flashback to a previous mosaic workshop in 2016; to being involved and engrossed in sketching outlines and laying the tiles in such a way the eye moves along the finished work; to my delight and pride in the finished piece. I itched to do more. I dreamed of one day laying a mosaic floor panel in my courtyard garden. More than daydreams, I had actual dreams at night when I would feel the stone dust gritty on my hands and arms, the sweat pricking along my back, and the ache in my hips from sitting cross legged on the ground, humming to myself as I worked.

I still want that future.

🌿

Today I wonder, is what I really want that past me back again? I want to have that body again, a body less limited, less disabled than the version I have today, and will likely have next year too. I want to entertain those dreams and have a realistic option to turn them into ambitions, should I choose to.

Is this yearning, or nostalgia?

As the metal warms under my fingers, and a couple of slow tears dry on my cheeks, I feel in my heart, in my gut, that there’s no turning back.

There is only forward, into the unknown future where these nippers and all they embody are a weight I’m no longer willing to carry.

🌿

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• Do you have what some minimalists call ‘identity clutter’? Belongings that were used by Past-You and don’t fit your current life, or Future-You who you don’t have time to become? What currently unlikely version of you do you find hard to let go of?

• Do you have a pet dream or ambition that won’t be realised now? I once sat on the Magdalen Bridge in Oxford and wept because I realised I would never be a 19 yo undergraduate riding my bicycle to a tutorial. I hadn’t even known that was a dream, or perhaps a fantasy, but having it crash into reality made my first visit to the Dreaming Spires a bittersweet experience.

• Being realistic about the forseeable future doesn’t mean ‘never’. If I recover enough, I expect I’ll buy more nippers. Have you ever abandoned an activity you loved, only to find that it ‘came back around again’?

• Share your story in the comments, and let’s keep the conversation rolling…

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Welcome to Armchair Rebel: chronic reflections inspired by life in the slow lane. I hope you’ll feel seen, and find comfort and community here, whatever your current state of health or ability. Disability is the only minority anyone can join at any moment, and that each of us will pass through in our lifetime. That’s not a threat, that’s just how it is.

I am fragile, and have been for several weeks now.

Last week I was really brave and I didn’t sugarcoat how brave a fairly pedestrian thing was for me. I went to get a blood draw done. It took two goes, even for my favourite phlebotomist.

I celebrated with myself for my courage.

I comforted myself for my fear.

🌿

I lean into the languor of recuperation. I listen to my body.

I feel frustration with my lack of ‘spoons’ / energy.

I feel guilt about prioritising myself in the face of others’ needs.

I read Kate Manne’s latest essay on ‘naysaying labour’.

🌿

I’d like to be playing with arts and crafts

. . . wanting some ‘Vitamin F’ (Fun).

Fun requires both stamina and permission.

I am sleeping, journaling, eating convenience food, and sometimes running the dishwasher.

Knitting a little when I can. I can knit lying down.

🌿

I am fragile, and my fragility is not a moral failing, merely one facet of the human experience.

I need to witness and affirm myself knowing this. Maybe you do too?

Thank you for reading, your time and attention are a gift.

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• Are you deficient in ‘vitamin F’ (Fun)? What is one fun (or fun-ish) thing you could do right now? Or within the next couple of hours? Kitchen disco? Play with your crayons? Romp with a child or pet? Pop outside and snap a photo of a great cloud or flower or leaf?

• When was the last time YOU felt fragile? What was the hardest part of that? Physical suffering? Loneliness or sadness? Other people’s attitudes?

• Did you take as much recovery time as you needed? Were you accepting of your speed of recovery, or did you try to come back faster? Have you ever taken longer recovery time than you actually needed?

• Share your story in the comments, and let’s keep the conversation rolling…

  Leave a comment

Welcome to Armchair Rebel: chronic reflections inspired by life in the slow lane. I hope you’ll feel seen, and find comfort and community here, whatever your current state of health or ability. Disability is the only minority anyone can join at any moment, and that each of us will pass through in our lifetime. That’s not a threat, that’s just how it is.

As my cats ravened their way through their lunch, I notice I feel ‘a bit off’ and slump into a nearby chair. In a minute, I’ll gather myself and push on.

The word ‘push’ brings me up short. It’s a mental warning light. What was so draining I required this rest and a pep talk in order to push on? Walking a half dozen steps into my galley kitchen for lunch.

Oh.

Oh no.

The realisation that foraging—not even cooking or microwaving—lunch will take a big effort sinks in. I burst into tears.

I’ve learned to pace myself, and accept that pushing is counterproductive, even dangerous to my health. So why do I find acceptance easier when the thing that needs a push is ‘big enough’? (I think we all know why, right?)

Am I the only one to ask ‘why am I so tired?’ and find ‘because my body says so’ not a good enough reason? Am I the only one who has kept going anyway, with mixed results? Sometimes I might get a second wind, sometimes my fatigue might be resistance or boredom… but mostly, I’m just tired. Tired out.

In order to reliably function, some of us have to say ‘no’ to alcohol, some of us have to say ‘no’ to half of a family block of chocolate, some of us have to say ‘no’ to doom scrolling on our phones. I have to say ‘no’ to hustle culture, and ‘no’ to the idea that I’m only worthy when I’m doing, that I have to earn rest by doing.

It hits me that there are places where I know saying ‘no’ is discipline, but saying no to doing, to ‘hustle and grind’ because it’s harming my health: I don’t call that discipline. I often call it ‘lazy’, which is my internalized ableism showing, again. Ableism is like glitter: it gets everywhere.

I don’t want my day derailed before 1 PM. I don’t want to know how sore my body is. I don’t want to be responsible and mature and take the steps that offer the best chance of tomorrow being abetter day.

I listen to my body and stop before I have a PEM crash. After a few minutes of lying on the sofa, watching the clouds, I run the nearly full dishwasher and retire to my bed with a jug of water. My cats join me with enthusiasm.

I hope I might find that second wind after a couple of hours’ rest, but no. I spend the remainder of the day horizontal. I alternate doing nothing with listening to a cozy mystery audiobook on 0.85x speed. It is a bit boring, but I persist after checking in with my body.

I’m embarrassed that I still find it easier to ignore my body, to do the thing, appease cultural norms, get the little hit of dopamine and only realize the cost when I pay later… sometimes for days.

Rather than feeling a failure, I decide to celebrate my grit and discipline. I chose the hard right thing, rather than the hard easy thing.

When I wake up the next morning, the leg pain that has been annoying me for several days is gone. And in a quiet and unspectacular way, the day is better for the previous day‘s rest. I even empty the clean dishes from the dishwasher, and put them away.

Society honors the runner out running whether they feel like it or not, and praises their commitment to health and fitness.

This month is Disability Pride Month. You probably won’t see much about it. So today, let’s honor all the chronically ill or disabled people who are resting whether they feel like it or not, and praise our commitment to health and fitness too.

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• I invite you to help me celebrate Disability Pride Month by choosing a moment to rest when you notice you are tired, whether you feel like it or not. It might be for 5 minutes, or half an hour or even longer.

• The next time you rest, notice what feelings or thoughts rise up in you. Do you keep thinking of tasks still needing to be done? Do you comfort yourself that you’ve earned this rest because of X, Y or Z you’ve achieved?

• Notice any feelings of boredom while resting (or not actively doing). When was the last time you rested (apart from sleep) without an electronic entertainment device? (I love an audiobook myself.) Do you even know what to do with non-digital down time?

• Let’s meet up in the comments, and keep the conversation rolling…

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When I first moved to the even-more-inner inner city, scant weeks before the pandemic hit, I missed the greenery of gardens and nearby parks. I missed nature. During the lockdowns, five years ago, I slowly began to appreciate the urban birds, the modest street trees, even weeds, growing out of cracks in the bluestone gutters. Above all, I connected with the ever-changing sky. At first, like Coleridge, I felt “pent mid cloisters dim” where I “saw naught lovely but the sky and stars” — though few of the latter, in my case, since light pollution mutes the stars, even in Lockdown.

My life now is small. While I leave the house most days, I seldom go beyond a few hundred meters. The furthest I go is to visit my mother, 20 km away. Much of my social life takes place online and these days my social life includes my healthcare interactions.

I’ve gradually learned not to over-program myself, to take on less “doings“. The past three or so years many of the responsibilities I once held and cherished have fallen away, handed over to others or simply not done, some not even noticed, which can be a bitter pill for pride to swallow.

Being “relevant“ sometimes feels like one of those To Dos (or many of them). I haven’t watched that show, because I can’t watch TV anymore. I haven’t seen that band, or eaten at that restaurant. I probably haven’t read that book. I haven’t been to that gallery, exhibition, or market, or fair. I haven’t been on that holiday (not since 2019).

If I am largely irrelevant to most of the places I spent the bulk of my time, I am still alive, and still paying attention. A friend told me recently that I’m embedded in my local community, noting to our zoom group:

“All the wait staff at her local café know her name!“

As the old TV theme song says, “Sometimes you want to go where everybody knows your name. And they’re always glad you came…” I was charmed by this version of my life. Reflecting on it later, I’ve decided that the true measure of being in community is that I know all the wait staff’s names. It’s the reciprocity that makes it community.

It may even be that I pay more attention because I have more time to give, at least to my immediate surroundings. Most ‘normal’ people I know are chronically time-poor. I can stop and watch a hot air balloon passing over, there’s usually nowhere I need to be that urgently. I mostly walk within a few blocks’ radius, so I’ve become a familiar face to many. And the faces of the locals are familiar to me. Some of the tram drivers wave to me. Ditto the shop staff. I know my local trees… and birds… and dogs.

On a good day, this familiarity is a comfort and a privilege.

On a bad day, it can feel a bit banal and stifling. Both are true.

It seems that, having lost my wings, I find myself putting out some tentative, questing roots. We all continue to grow, until we are dead. We don’t always have to strive for our growth, or goad or push ourselves for it. Growth is a natural process that happens unless it is actively stifled.

I did not expect to put out the shoots I have. I sometimes feel that, if I were a rosebush, I would be one of those half straggly, half stunted ones, that sometimes surprise you with an unexpected flower. I know that I surprise myself, from time to time.

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• What is the last thing (TV, music, book, craft, outing) that you did, more for relevance than for a burning desire to do it for its own sake? By relevance, I mean because your friends or colleagues all did it or wanted to do it.

• Where do you experience a sense of community? At your workplace? Through a hobby? Walking the dog? At the library? At church? At AA? Painting over fascist graffiti? Community is where you find it.

• Have you ever found out you’d grown a few roots, only when you moved on and experienced the pain of having them ripped up? Where might you be putting down roots today?

• Let’s meet up in the comments, and keep the conversation rolling…

  Leave a comment

I wasted some time this week. It felt illicit, like I imagine bunking off school would. I had a list of necessary To Dos, but I was 'tired and wired' from an important social event over the weekend. Since I am the sort of 'good girl' who gets a thrill from ticking off a list item, this strong case of the 'don't wannas' surprised me enough I gave it some attention. When I noticed the strength of my yearning, I decided to respect my body's knowing.

My carer took me to my favourite homewares store and we did a slow lap looking at lovely things. There wasn't a single thing I needed to buy, and really none I wanted to buy at that moment. We ended our jolly with coffee and a sandwich at the cafe.

I could feel my jangled spirit winding down. It reminded me of weekends back in the Before Times.

That weekend feeling… is rare when you manage chronic illness

It struck me, later, that I almost never have that weekend feeling any more. If I'm not diligently doing an essential daily living task like cooking or just enough cleaning to manage, then I'm diligently resting or diligently planning out my necessary medical and support sessions so they're not too exhaustingly close together.

I seldom have free time and even when I do, I'm limited by my physical capacity (or incapacity).

On that sunny morning, I had enough physical energy to wander gently through attractive space, and doing that didn't require much in the way of either brains or emotional regulation. It was just living. Since it was not happening inside my flat, I wasn't surrounded by undone tasks or craft projects waiting for enough available brain power to get me over a tricky bit. I was just… out and about… being.

It's an added relief that with a paid carer, I'm not ruining my friends’ fun I have to pull the plug half-way because I've overestimated my capacities. The fear of needing to ask loved ones to take me home mid-event, or even when an outing has barely begun, is an added stress on those of us with invisible chronic illness. So is fearing the consequences if instead I suck it up and push past my limits—if that's even possible. These thoughts aren't front of mind. It's not something I ruminate on, rather its a fact of life, one of the daily risk assessments I have to run.

It's tricky to feel like I'm taking a break with all of that going on, plus whatever current symptoms I'm dealing with as well.

The week before, I had my monthly massage, as recommended by my exercise physiologist (EP). My EP asked me how long the greater ease lasted after the massage. I feel wonderful for a good couple of hours and I sleep well that night, then I feel less 'crunchy' in my range of movement for around three to four days. My EP suggested that was a pretty good investment of time and money. I agree.

A waste of time, or something else?

I mentioned that so was my 'waste of time' outing, which has carried me through the a bad change-of-season migraine and the PEM crash that follows any social function involving more than one or two people.

My EP reminded me that there are more types of resting than lying in bed or on a sofa, and that any time my body is capable of it, investing in restful activity would be of great benefit, productive, even. My EP warned me that the more I am able to do, the more I need to build in active rest. Otherwise I'll quickly undo any gains I make.

The kicker was when they said, "You have to use your extra energy for the thing that is highest value.” My mind immediately went to tasks and to dos, seeing my expression, they added:

"By highest value, I mean the thing that will give YOU and your wellbeing the greatest return on investment."

The ‘afterglow’ of doing the dishes is half an hour

Oof. The ‘afterglow’ of doing the dishes is around half an hour, so not a great return, actually, unless things have got really out of control in my domestic arrangements.

I'm finding it uncomfortable to be honest about this, to admit that more bunking off (active rest) really would give me a greater return. It has me wondering, what would happen if I gave myself permission to do active rest more often, even (dare I say it) regularly?

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• What small moment lightened your day? (Today, yesterday, recently?)

• Can you recall other small moments that linger in your memory when day to day has faded? Is there anything that links these together?

• Take five minutes today— soon after reading this would be ideal—do something frivolous, something that will lighten your heart and mind. How do you feel afterwards? How do you feel a day later? Something to think about.

  Leave a comment

With summer turning to autumn (fall)—despite today’s 34’C/93.2’F—I’m eating all the summer fruit I can lay my hands on. Yesterday it was a delicious peach, and a white nectarine (my current favourite stone fruit). The peach was flavoursome, though a little ‘floury’ from the hot summer. New season apples and pears will start in soon. I can already feel the crisp, crunchy juiciness, so evocative of early autumn.

I promise this essay is not all about food, bear with me

Today I read an article that scolded us for our declining diets, and specifically headlined not eating enough fruit1. I am eating fruit, because rather than worry about weight, I’m concerned about nutrition these days. Yes, I’m still fat, but I weigh less now than I did before I got ME/CFS. No, I don’t recommend it as a diet. Being too tired to prepare food or even eat it some days is not healthy.

When I worked full time, I struggled to eat fruit. When you shop weekly, storage can be an issue. So is money. Its hard to justify buying a big bowl of fruit, only to throw it out at the end of the week, all brown and rotting. Coming home after dark, after a 10 or 12 hour work day, to fruit either not-quite-ripe or over-ripe holds little appeal. Eating it feels dutiful or penitential when we feel the need for reward or at least some gratification.

Now that I can’t work and can’t carry much (medical leave / disability), I’ve taken to shopping like our foremothers did, stopping in at the supermarket (grocer) most days on my short walk to buy a few perishables. I find I really enjoy fruit. It tastes and smells delicious. It contains fluids and fibre and kilojoules (calories). My cats don’t hassle me to share either. Did I mention that it’s easy to prepare and eat? Grab and go, unless I get fancy and plate it up. And it looks very fancy, if I do plate it up as a treat.

After a while I’ve noticed I’m eating fewer shelf-stable treats2 (chips/crisps, biscuits/cookies or chocolate). I haven’t been trying to cut down, except in the vague way most of us seem to be. It’s just happened, because I concentrated on adding something—fruit. I guess I have less space for other things? I also find I’m getting a lot of pleasure from the fruit, so I’m maybe not feeling a need to reach for a sweet hit from the shelf-stable stuff as often? Maybe I’ve satisfied a need for both nutrition and pleasure?

The same thing may apply to pacing and productivity

My healthcare team have each given me the message that I’m living up to the max of my energy limits again. Those energy limits have shrunk, too. So I’m trying to squeeze in enough essential domestic and personal care, with some semblance of a creative or social life, with supporting people I love who are going through major stuff.

I’ve been trying to do less. Which works for a while, at the cost of extra brain fog from thinking, thinking, thinking as I reorganise my To Do list in the hopes of making everything fit, and spend extra hours in bed recovering when I get it wrong.

You know what I’ve found has dropped way down the list, because in our hustle culture world it always feels expendable? The stuff I do just because I enjoy it. Art, craft, music, time in nature... frivolous stuff like that. Essential stuff like that. Also socialising purely for fun, rather than as a drip-feed check-in with all the people I love to offer enough connection and support (I hope) to keep our relationship alive without exhausting myself. Or to seek support on really hard days, which is also exhausting.

Last September, I did a Create Every Day challenge (#CED24). It required 5 minutes (or less) of craft that wasn’t aimed at productivity, that was just for fun. I did the challenge, and it lifted my spirits and my energy levels a bit. My domestic standards fell by a point or two. I ate a few more pre-packaged meals. And life went on.

I didn’t decide what to drop, using my fibro-fogged brain. I just did my bit of craft, and then did the everyday stuff with whatever spoons (time, capacity) I had left. I guess I’ve been focussing too much on what felt urgent, rather than on what is important.

Keeping our spirits up for the daily struggle, doing things that give us energy and joy and hope. What could be more important than that?

Subtraction is often just diet culture and hustle culture, stuck outside, wanting us to invite them over the threshold so they can suck us dry. Sometimes, it takes less energy and effort to focus on adding one thing —to your diet or your schedule—rather than trying to clear enough space first. Sometimes you have to do one thing more, to do less.

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• What fruit do you love, whether fresh (raw) or canned in juice or syrup? If its obtainable and within budget, buy some and really pay attention when you enjoy it. (If you hate fruit or are allergic or intolerant, that’s ok, choose another food item you enjoy and want to have more of.)

• What is something frivolous you’ve wanted to do for ages? It could be social, creative or just fun. Find a way to do it for as little as 5 minutes. Do a doodle, text a voice message to a loved one, dance in your kitchen… How does that feel?

• Share in the comments a time when you found addition more effective than subtraction… we all need those stories!

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The world feels like its on fire… literally and metaphorically. And I can barely get out of bed for the pulsing of a migraine.

I prise myself carefully upright and feed the famished felines who have been patting me awake every time I dozed off for the past half hour. I water my balcony plants against the heat of the day to come. I drink my electrolyte solution. The immediate biological needs of the living things in my care have been dealt with, and I lie down again to recover.

I do some meditation, in which I try to accept and repurpose my pain and frustration as energy that I return to the universe. I may be kidding myself, but it feels like it might be doing something good. I feel a little more connected to the world, at least.

Part of my exercise rehabilitation is to have a short walk any and every day that is possible. I put on yesterday’s clothes—I only wore them for 2 hours—and head out, making for the cafe 500 metres (a quarter mile) away.

I greet any neighbours I see. My sticks and mask make me visible, an eccentric. My daily routine makes me familiar and predictable. It’s quite nice when people smile because they recognise you, and vice versa.

The birds strut out of my path, unhurried and unalarmed, they know I cannot chase them. The dogs being walked know me for a reliable source of scratches behind the ears. The air is softly humid against my skin, pleasant now it threatens to be sticky later. My shoulders and ankles burn with a familiar, if unwelcome, pain.

At the cafe I exchange brief greetings with the staff. It is busy early, thanks to the tennis grand slam event. As I wait, longer than usual, for my drink order to be filled, I notice that even with extra staff on at 0815, they are getting in the weeds. The first groups are leaving, queueing, wanting to split the bill; the baristas are going at full speed making coffees, smoothies, fresh juices and even cocktails for seated groups; there are more people waiting to be seated, and a large group’s cooked breakfasts are ready at the kitchen hatch. It takes two servers to ferry it all out.

After a few minutes I get up and bus the three tables that, most unusually, are not yet cleared. I get grateful, agonised eyerolls, from the staff who notice, and I collect my own coffee from the counter, putting the order slip on the spike as protocol requires. It amuses me that, in 30+ years, I haven’t forgotten. I enjoy my coffee even more feeling that I have been a small help. A force for good in my tiny corner of the world.

Walking home, after, I’m slower. The migraine won’t quite let go. My body feels stiff and ungainly, I can’t quite catch my rhythm or my balance. It feel ridiculous to have so much trouble doing something as simple as walking.

There are several people waiting outside for the emergency housing service to open. They look anxious, embarrassed or numb, depending on their mood or circumstances. A couple of rough sleepers, a mother and child, a youngster who has been thrown out after a breakup, a few middle aged and worried. I wish each a good morning, and they nod and mutter good morning back. Some even smile.

One guy asks me where I got my walking poles as his partner has back issues and the pain makes walking difficult. I’m glad to tell him they’re not from somewhere special, they’re from BCF (Boating Camping Fishing) and his expression lightens as he knows it well. His partner emerges, limping, as we talk and is enthusiastic about getting poles of her own.

“I never thought of just using them ski poles things!” She says. “I gotta do something, it hurts so bad, some days.” They are too warm with their thanks, which makes me a little sad. I hope the poles work for her.

My disability makes me more accepted by the people doing it tough. My inner city suburb has every type of inhabitant, from rich urban professionals in luxury apartments, to refugees and people struggling with mental health and addiction, who live in government housing, if they are lucky, and on the street or in their cars if not.

The down and out folk don’t often ask me for money unless they’re really desperate. My greetings are accepted as simple human acknowledgement where once they might have been seen as patronising. They don’t patronise or pretend they don’t see me either, the way some upmarket city types do. We see one another. Its not much, but its not nothing.

Home again, I lie back down to recover. I reduce my productivity goals. I pay one bill, and file three receipts. It will have to do.

I send a couple of texts to friends, to let them know I’m thinking of them. I send a card to another using an online to print service.

My vision blurs. A stab of pain spikes through me. It will have to be enough. My cats come and sit on my legs and chest, pinning me down. They are good at signalling when its time to stop.

As I fall into the darkness, I remind myself that all I can do is keep putting one foot in front of the other.

It never feels enough, but then it didn’t when I was able to do so much more. We can only do what we can do on any given day. No-one can move faster than one step at a time.

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• How much do you have to get done in a day to feel like it is enough? Has this ever happened?

• What is the maximum you could reasonably hope to get done today, or on a given day? How big is the gap between ‘enough’ where you don’t feel like a failure, and a ‘spectacular’ where you achieve as much as is humanly possible?
  Hint: it should be a big gap. Most of us only have a few spectaculars each year. They are usually forced on us by a crisis in one area of our lives or another, they’re not something to program in weekly.

• What could you remove from your To Do list today, without extreme consequences like getting fired, someone dying or being injured, people hating you forever, police involvement etc? Maybe try it?

  Leave a comment

A couple of weeks ago I had frozen peas and corn for dinner. I was in my post-Festive season symptom flare. Mostly horizontal. Limited capacity for much and I’d run my food stocks right down. There was no protein option, but at least I ate some vegetables. Its was fine, as a once off.

I don’t know why eating a bowl of peas and corn felt sadder than a bowl of cereal for dinner. Actually, I do know why. Pop culture has normalised eating cereal for dinner—sometimes—and its something I did as a university student, before I became disabled. So I guess that’s ok then? I suspect what I felt was a tiny sting of despair.

Despair is a funny emotion: the dictionary says it is the complete absence or loss of hope1. It wasn’t really despair at one slightly sad, if nutritionally acceptable, meal: it was despair that I couldn’t manage to get myself dinner. It was the despair of ‘this should be easy’. My hope was the perennial grind-culture hope of ‘getting my shit together’ which is perfectionism talk, and kind of code for ‘being impeccable’2.

You may wonder why not just order a meal delivery? They are available here in Melbourne. I have used them, sometimes. If I lived in a house rather than an apartment (one of 100 in our block), I probably would have. The delivery person could have left my bagged dinner on the front step, and I could have snuck out and grabbed it after they left. Instead, I was already in bed, and it was a hot and humid summer evening. I would have needed to put on my compression garments to go down to our building’s foyer to do a face-to-face collection. I just didn’t have it in me.

The next morning I struggled through brain fog and post-exertional malaise to problem solve getting groceries. It takes a lot of support to function as well as I do. It also takes a lot of thinking and planning to make the best use of that support. My helper could tag along to act as ‘pack mule’, but going to the grocery takes about 45 minutes at the pace I can walk, and she’s only with me two hours per week. I had a lot of other urgent tasks too: watering plants; getting stuff off high shelves; doing a few dishes and emptying the dishwasher3 So I hoped to avoid using it all on shopping.

Why don’t I get home delivery? Having heavy groceries dumped in the building foyer, at a random time during a 4 hour window, during summer, then having to ferry them upstairs is not as much help as you’d expect. If the delivery person leaves them near our letterboxes, which are public access, deliveries can be stolen. A couple of orders had so many missing items due to stock shortages that I couldn’t meet the minimum spend, and the order was automatically cancelled.

The solution seemed to be Click&Collect4. I was able to grab the last slot of 2-4pm. My carer was due from 12.30-2.30pm, so that gave us half an hour’s grace. But 2pm arrived, we were parked in the Click&Collect car space and no notification had arrived.

Rising panic didn’t help me trying to work out the best option. Go into the supermarket and shop manually? Wait and hope? Go and hire a Flexicar and come back, alone, when the order was ready? I was embarrassed by this amount of difficulty with a basic task like buying groceries. I was annoyed that I might have to spend extra money to hire a car. I had a migraine starting and wasn’t sure driving was a safe option, as I can lose depth perception during a migraine. Maybe a taxi? But what taxi would come to drive me 500m and back? Tears pricked my eyes, and my kind carer seemed ready to do anything to fix a problem that was not of their making. I felt like a complete and utter failure in that moment. The warm wash of shame held me paralysed.

This tiny crisis had a happy ending. Encouraged by my helper, I rang the contact number and explained the urgency. Within 20 minutes my groceries arrived, were driven home, and unloaded before my helper had to leave. Most of them were even what I ordered. At which point I collapsed onto my bed and wept again with sheer exhaustion and the embarrassment of being seen as—of being—helpless, even for an hour or a day.

My feelings were so big, they piqued the corner of my mind that was still able to notice anything. Why was I even thinking about all of this? Why was I obsessing about efficiency? Why was failure at being optimal with my time management so painful? Why did it feel like with any incompetence or difficulty performing, my enoughness was on the line?

A year ago I noticed that being good hasn’t healed me. Now, it seems, I am trying to be ‘good’, to hustle my way around my energy limitations not to be healed, but to be impeccable. Despite limited energy, to ‘manage’, to be as independent as possible, to still be seen as a competent, worthwhile person. (Ouch.) But just as a budget won’t help you when you don’t have enough money to pay your essential bills, an energy budget won’t help you when you don’t have enough battery power or spoons to keep yourself fed and clean.

If we could hustle our way out of the problem of being human, I’m pretty sure we’d have done it by now. Part of the problem of being human is fluctuating capacity. Part of the problem of being human is that we’ll all be ill or injured at times.

That afternoon, my inner critic said, “You know what’s wrong with you…?” and prepared to settle in to clarify.

I said, “Yes. Absolutely nothing is wrong with me. I am sick but that doesn’t mean I did anything wrong or I am anything wrong.”

Neither are you.

Thank you for reading, your time and attention are a gift!

Over to you

• How much do you have to ‘achieve’ in a day, to feel like a fully functioning human? To have justified your existence? (Your existence needs no justification, that’s just the intersection of toxic capitalism and ableism trash talking you.)

• Do you, or have you ever, kept out of sight because you were not at your best, and you didn’t want anyone to notice? What did your inner critic say to you about it? Whose voice from your childhood did that inner critic use? Does it call you a flake, lazy, stupid, useless or some other unkind thing?

• Is there a person or people in your life who you can bear to see you in your clueless, exhausted or strung out moments? A person or people who you know will (or would) still love and respect you even if you turned up with only 15% of your usual abilities? Take a moment to appreciate their presence in your life.

• Bonus question: Are you someone who can witness another person’s moments of weakness and not weave them into a negative identity like ‘needy’ or ‘flaky’ that they will carry forever after?

Leave a comment

As an Australian, rather than a USA based writer, the political backdrop is less…extreme. But the influence of Billionocracy reaches us the same. Together we are stronger.

Thank you for reading.”

Small Stands Tall

Dear Substack Community -

When you came to Substack to write or create or read, you probably thought this would be a cool place to grow and explore. And it is. But Substack leadership has put a lot of mechanisms in place to promote and platform voices that are large, hateful, and intent on harming others through disinformation.

We—the collective, small voices of creators and community members on Substack—believe that this is wrong, it is hurtful, and it has the potential to stifle growth for many of us. Worse, it further marginalizes many of us who are actively targeted by the increasing wave of local and global laws, policies, and social stigmas being promoted around us.

Small voices have big power when we stand together in solidarity, and most of the publications on Substack are small, just like us. This means we get to decide how and where we spend our time, money, and attention.

Signers of this letter believe in the following:

• We help our neighbors by calling out hate-speech, racism, misogyny, intolerance, bigotry, xenomisia, homomisia, transmisia, ableism, genocide, and violence when and where we see it by reporting and blocking such content and sharing the collective knowledge about harmful accounts.

• We endeavor to build community by caring for one another. Caring means showing up for one another even (especially) when it is hard or scary to do.

• We reject the intentional platforming of voices that spread hatred and disinformation.

We stand proudly for kindness and inclusivity, and we invite you to stand with us. Small voices can achieve huge change when we unite.

Signed,

Small Voices against Big Hatred

Robin Taylor (he/him)

Its tricky being a productive newsletter writer when you’re forced into the slow lane. Especially in the new year, with everyone making #resolutions and #writinggoals and #commitment. 2025 is a fortnight old, and I’m already feeling shame that you haven’t heard from me yet… or for the past few weeks… Maybe that is a bit of a relief? If your inbox was anything like mine?

This past couple of weeks, two writer friends and each reminded me of a random comment I once made: that how often you ‘get back on the horse’ is the only streak that matters.

In late 2023 I began a writing challenge, a first, very rough, draft of stories for my non-fiction book about working in the funeral industry. Guided by my work with writer and creative coach I set myself the target to write daily. I let go of any aspiration to write 1000 words a day, or even 100 words a day. I set myself the achievable (but not easy) goal of one sentence each day. Anything more was bonus.

I set that goal sincerely, while also knowing I would probably break my streak sooner or later. Have you ever tried to look at a screen, let alone string words together, during a severe migraine? Or during a flare of ME/CFS when your joints are on fire, your brain feels like it has turned to mush, and you are so tired you’re balancing drinking water with how many trips to the toilet that will require?

Broken streaks are so de-motivating! I hear you. So turn your break into the only streak that matters: how many times will you show up again, anyway? AKA how many times will you get back on the horse?

For accountability, I shared each daily with my online writing group. I even logged missed days e.g.

Day 224-226 no writing, migraine

Day 227 - Family history is terrifying. My maternal grandmother died …

The game was to write every day, but the other game was count every time I missed the goal and came back… again… and again… and again…

I always had a streak I could add to! How motivating! How realistic!

In the end I plodded my way to a 50,000 word rough draft. Not all of them were ‘deathless prose’. Not all of them sucked. Its not as glamorous as birthing a draft book in less than 2 months, or in the 30 days of NaNoWriMo, but hey, it got the job done.

This kind of flexibility in how I approach any goal is kind of a ‘secret sauce’. Its equal parts frustrating and liberating, as I undo the bindweed of #hustleculture from my mind and soul. For now I promise to keep showing up here, and I also can almost-promise there will be gaps at some point.

This year I’m sharing one story from that book-in-progress each fortnight in a new publication : Life lessons from the death trade.

Intrigued? Learn more

I’m also excited to do some editing work —bonus, actual paid work— and I can’t wait to share the beauty of those books once they are available.

Happy plodding, and may you always find your way to ‘get back on the horse’ as you head toward your own meaningful creative goal in 2025.

Thank you for reading, your time and attention are a gift!

Over to you

• Do you get satisfaction from streaks? Or do you find them de-motivating? Share in the comments

• Have you ever missed a day of a new productivity goal and thought, oh its ruined now, what’s the point? Or spent so long castigating yourself as a lazy good for nothing loser that you started to believe your inner critic? Or is that just me….?

• What personal goal do you want so badly that you’re ok with being partial, spotty or imperfect in how you strive toward it? Where your drive to keep going is louder than your #grindculture ideas of how you have to #commit?

Leave a comment

To celebrate this milestone, I’m sharing this video reading of Ants, a very unexpected love story. The reading is just shy of ten minutes long, so grab a cup of your preferred drink, and settle in for a story:

Empathy and love in hard places

This story is close to my armchair rebel heart. I wrote the first draft while in a fever from a respiratory infection. I told it, still a little delirious, at a public online story slam in February. The idea of a collection was born. Ants went through a half dozen more drafts until the end of June. During that time, the second draft of my book went into hibernation, and I had a lengthy absence here, because there are only so many spoons in a day, and I still have to do Life™ on the daily, and allow for illness and other minor emergencies.

Witnessing and writing as armchair rebellion

Unlocking any achievement with ME/CFS can feel like crawling through treacle, all while watching other people sprint past. The secret to my story, this book, maybe to life itself, was the collaboration. We were – we are – truly stronger together. (HT )

Whatever unique challenges each of my fellow contributors face in their bodies, relationships or other circumstances, there is an alchemy at work when we filter that through a story. A story that somehow manages to be absolutely unique and also profoundly universal.

When we as readers witness that, when we feel with someone’s pain and joy, then we’re all a little bit more connected, a little bit more human, a little bit closer to the world we would rather live in.

Order paperback from Amazon.com.au

Order paperback from Amazon.com

Paying it forward

But wait, there’s more. All proceeds from What Is Love? story collection will be donated to not-for-profit CAMFED, a pan-African movement revolutionizing how girls’ education is delivered.

Thank you for reading, your time and attention are a gift.

This story was originally written to a prompt in the #SeptemberStoryStreak challenge on Story Republic, Keep reading after for more details of our forthcoming book What Is Love? a global collection of real life stories, including my story, ‘Ants’.

Its like vertigo, but this time the usually solid ground has literally fallen away.

I’m walking from the pool (too cold) back to the spa. I’m anticipating the pleasure of sinking into its warmth. The ground holds just long enough my body has committed to the shift of my centre of gravity. There is not even time for ‘uh-oh’, as a cascade of sensations engulf me, so fast my frontal lobe can’t make sense of any of it.

My left leg is plunging down, until gripped in a vice-like grip half way up my thigh. The tender flesh squeezed up until the skin feels like a balloon being pulled. Below, my lower leg dangles in empty air. The boards of the deck rush upward, the palm trees and hotel walls tilt askew. My face is only spared by my forearms, which slam flat against the wood, pressed beneath my chest, though my forehead grazes just hard enough to hurt. My right leg and foot are squashed under my sprawled body, knee bent up and toe still tucked like a sprinter about to start a race. All the air is knocked out of my lungs. Pain jangles along most of my nerve pathways.

I turn my head, rest my cheek against the sun warm wood, and try to breathe.

Above the rim of the spa, two small faces stare at me, mouths and blue eyes stretched wide beneath gold curls.

From around my body, klaxons alert: Wrong! Wrong! Wrong! I am about to scream curses, to vent my outraged shock, but years of preschool music teaching kick in: I can’t swear in front of little children. Instead I give a wordless moan. It sounds, even to me, like a cow in distress. The youngest child is inhaling to scream in panic.

“I’m alright, darlings!” I gasp, “I just have an ouchie.” The gaping mouth closes, I am grateful to be spared the hysterics. Hope I can contain my own. It dawns on me that I need to pull my leg out of the hole before the tissues swell and trap it. I hope its not already too late. I wonder if my body will even obey me. Everything feels rubbery and uncertain. I don’t think any bones are broken, but either way, the leg needs to come up. I sense I only have one shot. I inhale slowly. Hold for a count of three, then on the exhale I push up and away to the right with everything I’ve got. A long moment of resistance, a sensation of scraping and pulling but no worse, and I am free.

I flop onto my right side, and clutch my agonised thigh with both hands, hissing like a steam engine. Even through the rush of returning circulation, I can feel the skin is mostly intact. I dare to open my eyes, blinking at the azure sky remote above me. I glance across at the small dark hole in the deck. Its only as long as my foot and a board wide, with a frill of damp splinters where it broke. My leg is, usually, a lot wider. No wonder it hurts. I close my eyes again, trying to maintain a decent fortitude and work out what to do next.

There is sloshing from the spa, as water is displaced.

“I’ll get help,” a man’s voice, the children’s father. His feet ring on the deck as he runs, and the childproof lock on the gate clatters. Help would be good. The pain is… quite bad. As a migraine sufferer I am a connoisseur of pain. Not as bad as broken bones, but not good. The internal klaxon continues on a rising tide of nausea. Wrong! Wrong! Wrong!

“I have a boo-boo too,” says a voice near my ear. I open my eyes. The smaller toddler has plumped herself down beside me and proffers her small round knee. I blink and focus. The merest vestige of a healed graze shows on the soft skin. Her imperative hand points to her knee and she gazes, thoughtful, at my hands clamped around my thigh.

“They hurt, don’t they?” I gasp. She nods, emphatic. “But then they get better,” I manage.

She nods again, and shuffles a little closer. I am touched by her empathy, and warmed by her small bright presence, as we wait for help to come.

Thank you for reading, your time and attention are a gift.

Over to You

• Has the ground ever literally fallen away under your feet? Perhaps you missed your footing and fell down a curb or into a pothole? Perhaps something worse? Spend a moment or two connecting to your memory of that sense of vertigo (or whatever you felt).

• Any kind of sudden loss or illness gives us a similar sense of solid ground suddenly not there. It might be metaphorical, but its real inside us. What has made you feel like that?

• How long did it take you to recover from the times you’ve lost contact with solid ground? Are you recovered now? What if, like many of us with chronic illness or injury, it feels like we don’t ever recover that assumption of certainty that the ground will be solid. For example, its hard for me to predict how much energy I will have, day to day and even hour to hour. Like a glitchy battery in your smart phone, one minute I have 70% charge, the next it might be flashing red on 5%

Leave a comment

I’m excited to announce our story collection. What Is Love? official publication date was 7 October, which means it will be available to buy very soon. Click on the photo below to learn more, get sneak peeks and we’ll notify you when its available in your country! I can’t wait to share this joyful book with you and with the people you love.

1988: I've missed the tram that would definitely get me to the bus station in time. I have a split second to decide what to do. The later tram might get me there, but probably not. I have to be in Sydney tomorrow, not only to see my boyfriend, but also because we're going to a dinner party where I'll be introduced to his friends. His older, sophisticated friends. I don't want to be the bimbo flake who couldn't get her act together to catch a bus. I am desperate to get their seal of approval, or at least avoid disapproval.

I refuse to accept my fate, and call a taxi. Before I spend money I can't spare, I ask the dispatcher if he's sure the taxi can get me to the bus station on time.

"Shouldn't be a problem," the dispatcher says. "Car is on its way."

But the taxi doesn't turn up.

I'm forced to run for the later tram, praying and cursing as I swap my small suitcase from hand to hand. On the tram I watch the minutes tick by, in an agony of suspense, as we stop-start through the Friday after work traffic. When we get to the bus station, I see that there are still a few intercity coaches in the bays outside. I sprint, hope surging, and suitcase slipping from under my straining arm.

None of them is ‘my’ bus. In the ticket office I burst into mildly hysterical tears. I make a rash offer to buy a ticket with another coach company, but the staff remind me that the company I was booked on has the latest departure of the day to Sydney. I should have remembered, its why I chose them in the first place.

Now I will miss the dinner party, my boyfriend will be disappointed, and maybe annoyed at having to explain my absence, his friends will take offence, my boyfriend will break up with me, and what if he is the love of my life, and my life will be ruined? This all seems more than plausible, it seems imminent and assured, in my adrenaline soaked exhaustion, after a brutal work week.

"Look," says one of the ticketing clerks, with a fatherly air. "The best I can offer you is to put you on the Brisbane bus, then when they stop in Forbes, in New South Wales, you get off and wait an hour or so and then the Adelaide to Sydney bus will pick you up. It's a bit of a detour, but you'll be in Sydney by lunchtime. You can have a bit of a sleep and still get to your party. But you have to make up your mind now, yes or no, because the Brisbane bus is leaving and I won't hold it up."

I dither for a moment. The 12 hour overnight bus trip is now a 16 hour overnight bus trip. I won't be in much shape to enjoy the party when I get there. I'm tempted to give up, and go home and sleep all weekend. It sounds a lot more appealing right now... but I rsvp'd yes. I'm expected, and I don't want to disappoint. Besides, the bus company and ticket staff have gone to some trouble to find this solution, in response to my panicked urgency. It feels ungrateful to say no. But I hesitate for another second.

Of course I say yes. It feels fateful.

"Right then, Cinderella," says the ticket clerk. "Let's get you to your ball." He lifts my suitcase with a grin. "You'll travel in style, your bus is brand new, drove here from the factory today."

But at 5am something mechanical or electrical malfunctions, the driver's airbag activates and the steering column collapses. The bus thunders out of control back and forth across the highway, toppling onto its side and grinding through the gravel and before finally coming to a stop.

As I am hurled through the darkness amid flying shards of glass, I realise I may be about to die. I'm being pummelled by bits of luggage, and by other passengers. If anything hard enough hits me, that will be it.

I'm not even supposed to be on this bus. If it was the Sydney bus that crashed, that might make a sort of sense, that would be why I missed the early tram, why the taxi didn't come. It would be fate trying to keep me safe. But how can this be the result of all my efforts?

How can this be my fate?

Thank you for reading, your time and attention are a gift!

Today instead of ‘Over to You’ I’m excited to unveil our story collection What Is Love? which will be available in mid-October. Click on the photo below to learn more and to register for no-obligation early access, plus a few sneak peeks! I can’t wait to share this joyful book with you and with the people you love.

My (rather expensive) titanium, rimless multifocal‘s slide gently from the bed to the thick sheepskin rug, and break. One lens has popped out, and a strand of transparent plastic thread, not unlike fishing line, sticks up forlorn from near the nose flange. They’re only four months old.

“What did you do? Did you drop them on concrete?“ The man at the big box optometrist asks. Or rather, accuses, peering at me from over his own half moon specs. “They’re not suitable for everybody. You can’t throw them around. I’m sure we explained that.“

Is it the walking poles, I wonder? I ease from foot to foot and wish there was a chair handy. I assure him they have not been thrown around. I ask if they can be mended as I’m unable to purchase another pair so soon. He purses his lips.

“I doubt they can be fixed.“ His tone sharpens, “And you wouldn’t be covered by a warranty, that’s for material defects, not rough handling.“ He relents, a little, “Besides, I’d have to send them to our workshop, and with the mail delays, you’d be waiting weeks.“ He even manages to look apologetic. Time to play the helpless woman card.

“You must have a lot of industry contacts,“ I say. “Do you know any optometrists around here who do their own repairs? It would be such a help… I really can’t manage without them for long…” He grudgingly gives me the name of a custom eyewear salon a few blocks away. Short walk for anyone who doesn’t have my bung leg. A mini marathon for me.

The eyewear salon is hipster-couture. Frighteningly so. I wonder if the big box optometry man is being passive-aggressive to punish me. I decide fatigue is making me paranoid. I’m here now, I can at least ask. It’s not like there is anyone else in the shop…er…salon. I am not keeping him from a lucrative sale. He examines my broken glasses with professional curiosity, then looks up with compassion.

“I could probably fix these, but its a fiddly job and would take me a long time,” he warns. “See here? The screw holding the bracing strand in place has broken in half? If I were you I’d take it back and wait for the repair. That way you won’t be out of pocket.” 

Perhaps my shoulders slump, because he leans forward, voice lower even though we’re alone. 

“And they should fix them, that’s a material defect, for sure. Nothing you did could’ve caused that screw to break. If they hit the ground hard enough to break that, the lens would’ve shattered. They should fix or replace them. It’s a matter of principle. You can tell him I said so.”

I thank him. Can a heart be warmed and sink at the exact same time? I sit on a bench for a few minutes to rest, until the same patrol car passes, slowly, for a second time.

There is a second staff member at the big box optometry store, the bright, kind woman who first sold me the glasses. Her colleague is busy with another client. I offer thanks to whichever guardian angel, genius locii, or particle of luck has blessed me. 

I explain, matter of fact, without heat. This woman, as she listens, walks me to a couple of chairs by the desk in the corner. We both sit. I’m pretty sure she notices the slight ‘thump’ as my thigh muscle stops working a couple of inches short and I drop onto the seat. I lay my arm across my lap in case the ripple of muscle twitches is visible. Her eyes remain focused on the broken glasses, as she jots notes onto a repair order. She ticks ‘urgent’ and ‘under warranty’.

“I know my colleague would’ve warned you it may take a few weeks. We can’t guarantee you our usual fortnight turnaround. Even though the lab isn’t busy, we don’t control the post.”

“I understand,” I smile. “There’s a pandemic on, I hear.” She grins back.

As I hobble out—sticks clacking, back and shoulders military straight, head unbowed—the man walks across to her, frowning, and asks a question. She nods as he remonstrates, but continues to pack my broken glasses for the courier to collect.

Thank you for reading, your time and attention are a gift!

Over to You:

• Next month my short story, ‘Ants’ will be published – ebook and paperback – in What Is Love? an international collection of sometimes gritty, often tender stories from life, about love for partners, friends, kids, animals, gardens and more!

• Too often it feels like love is in short supply, being a part of this collaboration reignited my belief in love’s potential and power. Its my hope reading these stories will do the same for you and for those you love.

• I’ll have more specifics soon, but I’m too excited not to give you a head’s up.

I’m lying back in the dentist’s chair with four hands wielding instruments inside my mouth. My dentist is explaining – to me and the dental nurse – that they are drilling out a cavity in an unusual location, in a back molar, close to the gum line.

My dentist sounds concerned. Could be acid reflux maybe? I fear its more likely my sometimes patchy dental hygiene. I flush as a hot wash of embarrassment and shame rises through me like a tide.

The hands are removed and I’m told to rest my jaw while I can. I remark that I am feeling ashamed of my cavity.

My dentist hastens to tell me there’s no reason to be ashamed and, on autopilot, asks me why would I feel that way?

I instantly feel ashamed of my shame. But I’ve been here before.

“Mostly because I’m a woman of my generation who was raised by the prevailing culture to think there must be something wrong with me when anything goes even a bit wrong.”

“Oh, right…” my dentist replies, preparing to go back in. I raise my hand slightly, the agreed signal to pause work.

“As soon as I hear myself say it aloud, I hear how ridiculous it sounds, I can’t help but laugh and that eases it. Shame shrivels when we bring it into the light.” I shrug, and lower my hand.

I open my mouth as wide as it can go. Work resumes.

Thank you for reading, your time and attention are a gift.

Over to you

• Have you ever had a moment of feeling ashamed of your shame? What did you feel ashamed about? What was the message you had absorbed, and from where?

• Have you ever been the person rushing to reassure, and saying, “Why would you feel that way?” I’ve said that in the past, but now I know how it feels on the receiving end. How could that question be phrased so it is less (accidentally) accusing? What could we say instead of asking a rhetorical question?

• Is there something you used to feel ashamed of, but have since reconsidered? What took the sting out of the same message for you?

  Leave a comment

  Thanks for reading Armchair Rebel! This post is public so feel free to share it with someone who could benefit from this week’s story.

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Most of us are used to thinking of our bodies as a machine. (A pity it doesn’t come with an Owner’s Manual, maybe?) We’re taught that our hearts pump blood, our stomach is our fuel tank, and we visit our health providers for a ‘roadworthy’ or ‘tune up’ every so often. I called my bi-annual gynaecology exam and pap smear my ‘grease and oil change’. We don’t always consider the subtle medical consequences.

Years ago, when I had some trouble with my gait, a physiotherapist told me, “I don’t think its mechanical, I think its electrical" and more or less wiped their hands of me. I eventually found a neurological physiotherapist who diagnosed a post-injury weakness in a couple of obscure hip muscles, and after a few months of diligent and targeted exercise, I was walking normally. Metaphors matter.

Grind culture wants you to believe you’re a machine

The machine metaphor has infiltrated medicine and culture, especially modern capitalist grind culture. Machines often work better if they are kept running, or at least used regularly. They are only meant to stop (briefly) when they run out of fuel. The original textile mills of the Industrial Revolution worked better – with less breakdowns and more profit – when the new machines worked all the time, so there were day and night shifts, and workers were penalised for slowing or stopping the machines.

If a machine doesn’t work smoothly, predictably, efficiently and reliably, what good is it? A machine is meant to keep going. A machine is designed to keep going. The machine metaphor puts us in the driver’s seat. It also makes us the origin of any problem with the workings.

There is an old aviation joke that airplanes of the future will be fully automated, needing only a team of three: a computer, a human and a dog. The computer will fly the plane. The human will feed the dog. The dog’s job is to bite the human if they try to touch the computer.

We see a similar focus of blame when something goes wrong with any mechanical or electronic item: the first question the Help Desk will ask is, What did you do? The medical establishment is not so very much different.

Realising this, we try to ‘unplug’ from our smartphones and the demands they carry to us 24 hours per day, and to get back into our bodies as a way to handle stress and anxiety. But your body is not a car, if you wreck this one, you can’t simply buy another to transport your mind around.

The Enlightenment, obsessed with either/or, decided you were a meat suit

The other metaphor is that we’re a mind operating inside a ‘meat suit’. Author Terry Pratchett said being human is “the place where the falling angel meets the rising ape”. The 2015 Pixar film Inside Out played with this idea to explore the role of emotions that ‘drive’ us. This is a nod back to Descartes and other philosophers who saw the mind as a small human (a homunculus in Latin, the classy intellectual language of the time) who saw the world imperfectly from the ‘cockpit’ somewhere in the brain. The search for which bit of the brain ‘runs’ which bit of the body has been going on more or less ever since, hampered only by reality.

You are not separate from your meat suit, and brain transplants, thankfully, are the stuff of fiction from Mary Shelly’s Frankenstein to Lois McMaster Bujold’s Jackson’s Whole colony where clones are ‘grown for life-extension purposes—not their lives, the lives of their ‘originals’, who will have their brains transplanted into the clone bodies, while the clones’ brains. memories and personalities are classed as “medical waste.” Ray Bradbury also plays around with the idea of body as separate from and perhaps inimical to the mind that occupies it in his memorably creepy short story Skeleton. It also informs other classic science fiction like Bladerunner, where the unstable minds of so-called 'replicants’ (engineered people) are made more stable when given ‘real’ human memories.

Medicine and wellness culture view the body as a chemical soup, likely missing a few crucial ingredients

It all goes back to the ancient Greeks and the Doctrine of the Four Humors, the idea that you need to balance the various components of the body. Medicine largely abandoned the humors once Germ Theory came along as a cause of sickness. I still regularly see hints to it in Wellness culture, particularly what has been called the Wellness Industrial Complex (including the growing and largely unregulated world of supplements and nutraceuticals).

You have probably taken a pill for something in the past year. Maybe a multivitamin or a pain killer or, if you live in Melbourne, an antihistamine. You may need a pill to balance your brain chemistry, or your hormones, to lower your cholesterol, raise your vitamin D or to stop your blood forming clots where they can block arteries.

It would seem that a pinch of this or a cup of that will turn us from a lack lustre bowl of slop into a refined bisque worthy of a Michelin star or three.

In case you hadn’t noticed, I like a good metaphor. It can help to simplify an idea just enough that we can grasp its essentials. Most of us can laugh at the idea we “have too many tabs open” when we’re multitasking. The problem is it can also oversimplify an idea, so we feel like we understand more than we do. Metaphors also carry emotional overtones an undertones that get carried over from the metaphor to the thing we’re comparing it to.

A machine is a thing, but a living human body is a person. Things are there to be used: people are not, or shouldn’t be.

So the next time you feel like you’ve run out of gas or your battery is running low, remember that machine metaphors imply you ‘should’ be able to operate all the time, given regular fuel or a reliable current… and maybe remind yourself that its only a metaphor, its not actually how bodies work.

Thank you for reading, your time and attention are a gift.

Over to You

• Are you a machine, a meat suit or a chemical soup? Why?

• Notice the metaphors you use for your body and how it works. Jot them down, or do a brain dump of things you say or hear other people say.

• What negative or inaccurate assumptions does each metaphor carry? For example, if your brain is a computer, then you only need ‘sleep mode’ when you don’t want it doing anything important. Yet sleep is an active process for a human body, and an essential process. Without sleep you will die. Without sleep your computer might eventually crash, but it can be restarted.

I’m slowly absorbing the audiobook of ’s latest: Unshrinking. It feels like essential reading for anyone with a body, thin, fat or anywhere in between. Toward the end of chapter six is this call to arms:

And we are among those who know the most about certain facets of the human condition. For example, we can help dispel the fantasy that bodies are reasonable — by which I mean subject to rational control and capable of being wrestled into submission via that suspect thing called mastery.

For bodies are not reasonable. They bend, they sag, they break. They get fat. They get old. They get ill. They become disabled. They die, ultimately, and we die with them. That is, of course, frightening. (“Doesn’t everything die at last, and too soon?” in the words of Mary Oliver.)

But our bodies are ourselves, as the feminist slogan has it. We are not separate from our bodies …. Then we will have to learn to live with, and in, our physical selves in all of their glorious and infuriating vulnerability and intransigence.

A few hours later I listened to Kate Bowler’s podcast Everything Happens where she talked with Maggie Jackson author of Uncertain: The wisdom of wonder and being unsure. Jackson introduces the idea of ‘breaking the inertia of your certainty’.

Living with a fluctuating chronic illness like ME/CFS or migraine or fibromyalgia or POTS (or all four) is pretty good for breaking certainty, and so is a breaking your arm or spraining your ankle or an untimely bout of stomach flu or food poisoning!

Routine experts become excellent at applying solutions to recognisable problems. Or as a dentist I met once said, “You could probably train a monkey to do most of what I do… but its taken me over a decade to learn when to do what I do.” Most people are routine experts of their bodies, at least while they are fortunate enough to be young and ‘healthy’.

It strikes me that much of the advice we receive around health comes from people extending their routine expertise in their own body or of the bodies they call ‘normal’ onto everyone. This means every body which doesn’t fit their routine expertise is automatically recategorised into ab-normal.

Jackson then introduced me to the new category of ‘adaptive experts’, who are unlike ‘routine experts’.

“who break the inertia of their knowing in order to gain greater ends. …these experts actually spend more time assessing a new, messy problem than even novices do. What they’re doing is using that playfulness and entering the space of uncertainty, and exploring. One roboticist told me ‘uncertainty is a space of possibility’.

I confess I often experience uncertainty as a place of discomfort and anxiety. Especially bodily uncertainty, the great ‘will I or won’t I be able to do x today’? Let alone the wider questions of ‘will I or won’t I be able to return to part time work?’, ‘will anyone hire me if I disclose my disability?’, ‘will I be able to access a disability pension if I need one?’, or ‘will I or won’t I ever get any better?’ is a fraught space.

The roboticist reminds me that I am already an adaptive expert. I had a flash of insight about all the adaptations I have already made to live within my body’s energy envelope. Accepting that routine is impossible, adaptation becomes possible, even imperative, I apply my curiosity and imagination to my body as-it-is and my world opens up wonderfully.

Now imagine what I - or someone like me - could do as a coach or consultant?

Thank you for reading, your time and attention are a gift!

Over to You

• Can you identify something you’re a ‘routine expert’ in? It might be maintaining your bike, or doing a housework task, or it might be a process you do at work?

• Have you ever tried to solve a problem where you applied every strategy you know (or can find with a google) and it still won’t work? Did you come up with a novel solution? How frustrating did you find it? How long did it take until you found a way around it or just gave up?

• Do you have a situation or circumstance in your health, workplace or in your life generally, where you need some adaptive expert thinking?

Share your answers and come join the discussion with our community of discerning readers…

Leave a comment

NB; Today’s audio volume is a little patchy due to tech issues caused by stormy weather.

The tram is getting away. Instead of resigning myself to wait, I burst into a run. Puddles splash beneath my shoes, syncopated by the rattle of my belongings jumbling together inside my bag. Car fumes and garbage and bitumen and the rotisserie chicken and fresh bread smells venting from the shops as I sprint past in hot pursuit of the tram's boxy rear end. It remains, tantalising, and out of reach.

I surprise myself with the ease of this. Breath, blood and muscle combine without need of conscious direction, responding to my unspoken thought. It feels natural: I am doing this! My arms pump and exhilaration floods me. I know it won't last long but, maybe, today it will last long enough.

Ahead the distant traffic light turns red. I see my chance. I lengthen my stride, duck my head and sprint all out. The balls of my feet seem to reach down to tap the pavement, as I hover, carried by momentum. It's almost like a flying dream. I avoid the mid-morning shoppers with ease, swooping around them, My heart is pounding now, my breath has the faintest catch as my lungs open full but not as full as my body demands, greedy for oxygen.

I strain forward, slap the door button as I leap, then I am through. I fall gasping into a vacant seat as the other passengers look up, senses pricked for danger, but otherwise incurious. Only the woman in the seat across the aisle, with a toddler squirming in her lap, smiles.

"You made it," she remarks. Its an accolade, a sympathetic acknowledgement that sometimes we make it, sometimes we catch our trams even when we start out late.

I unwind my scarf and pull off my beanie. I'm hot, the sweat trickling beneath winter layers. My glasses are steamed up, slipping down my nose. I remove them. In the window I catch sight of my reflection, face bright red, all over, not just a rosy glow on my cheeks. But my eyes are also bright, with laughter. I've chased the tram for three long city blocks, nearly a kilometre, for no particular reason. It seemed like a good idea in the moment. My body tingles, humming with vitality.

I should run more, I decide, staring out at rain soaked streets. It feels really great, like when I was a kid, running for the joy of it

I couldn't know it would be the last time. A bizarre injury, an illness, a long rehab and, eventually, the realisation: no more running for me.

Thank you for reading, your time and attention are a gift.

Share

Over to You

• Do you recall the last time you ran? What did that feel like? If you’re able to, maybe go and experiment the next time you have a chance? Go gently, and do so at your own risk, I’m no expert and this does not constitute health advice.

• Do you only run dutifully, for ‘exercise’ or because you’re about to miss a flight? How is that different to running for the sheer fun of it? For me, stopping when I want to is part of what made it fun.

• What prevents you from running? A physical limitation? In adult years my knees were quick to object. A story from your youth? An exercise physiologist told me I ‘wasn’t built for running. Or something else?

  Leave a comment

I haven’t been around much over the past 2 months, due to an increase in life commitments around health (mine and other loved ones’). This newsletter is different. Its mostly a collective letter to Substack leadership. Despite being late to the party, its important enough for me to publish - and I hope you’ll read it if you haven’t already fallen over it a dozen times. I’ve rounded it out with my further thoughts. I note, in passing, that ableism is a tool of nazism and racism so its not such a reach as it might at first appear.

Substackers Against Nazis

Dear Chris, Hamish & Jairaj:

We’re asking a very simple question that has somehow been made complicated: Why are you platforming and monetizing Nazis? 

According to a piece written by Substack publisher Jonathan M. Katz and published by The Atlantic on November 28, this platform has a Nazi problem: 

“Some Substack newsletters by Nazis and white nationalists have thousands or tens of thousands of subscribers, making the platform a new and valuable tool for creating mailing lists for the far right. And many accept paid subscriptions through Substack, seemingly flouting terms of service that ban attempts to ‘publish content or fund initiatives that incite violence based on protected classes’...Substack, which takes a 10 percent cut of subscription revenue, makes money when readers pay for Nazi newsletters.”

As Patrick Casey, a leader of a now-defunct neo-Nazi group who is banned on nearly every other social platform except Substack, wrote on here in 2021: “I’m able to live comfortably doing something I find enjoyable and fulfilling. The cause isn’t going anywhere.” Several Nazis and white supremacists including Richard Spencer not only have paid subscriptions turned on but have received Substack “Bestseller” badges, indicating that they are making at a minimum thousands of dollars a year.

From our perspective as Substack publishers, it is unfathomable that someone with a swastika avatar, who writes about “The Jewish question,” or who promotes Great Replacement Theory, could be given the tools to succeed on your platform. And yet you’ve been unable to adequately explain your position. 

In the past you have defended your decision to platform bigotry by saying you “make decisions based on principles not PR” and “will stick to our hands-off approach to content moderation.” But there’s a difference between a hands-off approach and putting your thumb on the scale. We know you moderate some content, including spam sites and newsletters written by sex workers. Why do you choose to promote and allow the monetization of sites that traffic in white nationalism? 

Your unwillingness to play by your own rules on this issue has already led to the announced departures of several prominent Substackers, including Rusty Foster and Helena Fitzgerald. They follow previous exoduses of writers, including Substack Pro recipient Grace Lavery and Jude Ellison S. Doyle, who left with similar concerns. 

As journalist Casey Newton told his more than 166,000 Substack subscribers after Katz’s piece came out: “The correct number of newsletters using Nazi symbols that you host and profit from on your platform is zero.” 

We, your publishers, want to hear from you on the official Substack newsletter. Is platforming Nazis part of your vision of success? Let us know—from there we can each decide if this is still where we want to be.

Signed, 

Armchair Rebel (Michelle Spencer)

Further thoughts

The letter has, so far, been shared on a couple hundred newsletters. It received a very underwhelming non-response from Hamish in mid-December (tl:dr we don’t like nazis but we won’t be doing anything about them). The ‘let the substack moderate itself’ position is complicated by Substack’s strict no-porn rule. I would have though that could be sorted by an ‘adult sexual content’ tag and an option to opt out of all such content.

There are some good discussions around free speech, I appreciated You can be Pro-Free Speech and Anti-Hate Speech at the Same Time.

One of the writers of colour I follow, Sharon Hurley Hall, left the platform. The response from Substack seems to have been the last straw, given that she had received no support when attacked by trolls on at least a couple of occasions. Sharon’s Anti-Racism Newsletter is now on beehiiv.

Many other writers are looking to go, or have gone elsewhere, taking their subscribers with them, as The Guardian noted earlier this week.

Others are choosing to stay because they don’t want to cede a space they and their subscribers love to nazis. Some are choosing to stay because they don’t view any publishing platform as much better (about moderation). For now, I’m in that last camp.

I am concerned about the relatively small number of writers of colour on Substack. That tells me a lot. I am even more concerned that writers of colour don’t often show up on recommended lists. You can suppress free speech by suffocating some voices, and making it quietly clear they’re not especially welcome is one way to do that. Especially when the voices you’re excluding are already marginalised voices, who have learned the hard way to read a room to ensure their physical safety.

A pleasing exception is Sashi Perera Sashi Writes a comedian, writer and ‘recovering lawyer’ from Australia . She went seriously viral (from 1,000 to 100,000 followers on Insta) with one clip that has racked up 9 million views. Sashi came to Substack as she was sick of trolls and hoped that most of them wouldn’t cough up for a paid subscription to troll her. (So far, so good, it seems.) She’s funny, you should follow her.

And still… Substack needs to make money, so promoting a comedian who is clearly on fire right now is business as usual. The fact that the comedian is melanated and female but not from North America, not the descendent of slaves, and is a lawyer in her day job (ie middle class) also seems to be business as usual.

There are few overtly working class origin voices on Substack. I’ve been looking. Dana Miranda’s Healthy Rich is one, as is Anastasia Selby’s Navel Gazing. I grew up more working class than middle class, and in recent years I’ve begun to notice how often my voice was suffocated at university and in the working world. Even here on Substack, some of the writers I enjoy live very different lives, and seem happy to assume everyone reading their newsletter is solvent middle class. It’s ok to moan about needing money, as long as you need it to support a lifestyle. Needing it to pay rent feels like something that would make readers uncomfortable. I was not - and am not - ashamed of my background. I do notice I am more welcome when I mimic middle-class, or at least middle-class aspirations.

I have found a valuable community here on Armchair Rebel, and in the newsletters I read and subscribe to (mostly the free subscriptions for now). Its hard for me to separate wanting to stay to try to move the needle in a more inclusive direction, and seeing that as choosing my needs and my comfort over the immediate and future safety of writers of colour.

Thank you for reading, your time and attention are a gift.

Over to You

• How do you navigate choices where no choice is unequivocably ‘good’? When both choices seem to have a lot of draw backs and a very uncertain benefit?

• Do you have a way to check if your arguments in favour of the choice that best suits your needs are rationalisations? (They’re called rationalisations because they’re rational.)

• How often do you revisit your choices? I like the idea of ‘do what you can, and when you can, do better’ rather than letting perfectionism (and a possible slight messiah complex) leave me in a state of paralysed inaction.

Enquiring minds want to know… almost everything, if you’re like me.

Chatting with a friend recently, they commented: “[W]hat a wonderful Agony Aunt you would be. So much wisdom”. Blush. My first instinct was to laugh, my second to deflect snd explain away their words. My friend offered a gentle corrective (thank you). I respect my friend’s judgement. I know them to be discerning and honest as well as kind. So I thought again.

My plan is to do a monthly ‘Ask An Armchair Rebel’ column, answering a reader’s question or conundrum to the best of my ability. I’m imagining you’ll ask questions relating to Life In The Slow Lane - whether you are a slow laner or not. Maybe you have other burning or just smouldering questions about something else? I’m not planning this as an AMA (Ask Me Anything) but you’re welcome to ask?

Reply to this email with your question and include whether you want to be anonymous (or not).

Thank you for your patience

Did you miss me as much as I missed you? Is that too needy to write in a newsletter? After a hefty hiatus (October, what October?) due to increased amounts of elder care, November looks promising for being able to press publish at least a couple of times.

Thank you for reading, your time and attention are a gift.