Your Life Is Not Over: A Book Of Apocalypses And How To Survive Them

Your Life Is Not Over A Book Of Apocalypses And How To Survive Them

Fiona Robertson (A Guide For Newly Sick And Disabled People)

THE FIRST THING YOU NEED TO KNOW IS THIS: YOUR LIFE IS NOT OVER. -From 'Disability: The Director's Cut'

To all the people who are newly sick, newly disabled, or have been here for a while and are still searching for meaning. For who you are now. You're in a hard place, and you don't need anyone else telling you everything will be fine. You might be grieving for the things you’ve lost. You might miss things you used to be able to do. You might be angry about plans you can no longer make.

But your life is not over.

I thought mine was. I’d always been the person who got flus and infections, but I climbed hills, I went running, I swam competitively for a time. I was studying the secrets of the universe when the disease took everything from me. I thought my life was over at 20, before I’d ever had a chance to do anything. For years, I struggled. I fought. I thought I was weak, and lost, and a burden. I fought to be taken seriously, to get anyone to listen to me. I believed people who told me I was faking. I took extraordinary abuse from doctors and thought I deserved it. When I finally encountered disability activists who taught me about disability politics, I was close to the end of my life. I thought that not getting better was my fault, and had internalised the stories about disability which doesn’t improve – that you die. They showed me another path. A story I’d never heard before. A story I’d never seen anywhere.

That’s the story I hope to share with you.

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Your life is not over. You have worth beyond whatever it was you did before. You are still whole. You are not a burden, and there is still so much joy to find.

This has been in my head for a long time but I'm doing it now for, of course, the huge number of newly disabled people living with long covid, who will be going through experiences similar to mine. I’m also aware of how few disabled people are lucky enough to meet activists like I did, and how few know there are other ways to live, other ways to see our lives. This is for all disabled people, whether your conditions are physical or mental, visible or invisible, neurological, variable, static, or some mix of the above.

There is no hierarchy of disability – each has its own challenges, and how it affects your life is what’s relevant.

You deserve more than just the stories abled people tell about us. The disability community is a loud, somewhat chaotic, beautiful chorus of insights and pride, and all of us are trying to reach the people who have never had someone take their hand and say, ‘I know you’re scared. I know you don’t know what to do next. We’ve been there. Let’s talk.’ We don’t want other people to have to fight like we did. We want a world where all of us get to live the best lives we can.

So here we are. I know you’re scared. I know you don’t know what to do next. I’ve been there. Let’s talk.

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Contents [Poem]

[Poem]

[Poem]

[Poem] [Poem] [Poem]

3

Disability: The Director's Cut

4

Rest

9

Systems

11

Wildfire

13

Doctors

15

Faking Wellness

17

After The Flood

19

Independence

21

Treatments

23

Drift

25

Do I Count?

27

Interstellar

29

The Disability Community

31

Alexandria Unburned

33

Lastly...

33

Contact

34

Acknowledgements

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Disability: The Director's Cut

The first thing you need to know is this: Your life is not over.

You are in the middle of the disaster movie, standing in the ruins of your city while all around you people are screaming about aliens and meteors and plague, telling you to run or hide or fight, and all you know is you woke up this morning worried about remembering, remembering to pick up bread.

This is the part of the movie where you find the old loners with answers.

We are the ones who tried to warn of the coming disaster and were ignored.

But some of us survived.

You did, too.

Come in, rest, while we tell you what you need to know.

First: the stories they’ve told you are sometimes true but they’re such a tiny fraction of The Truth.

They write their fears, not our reality.

They’ll spin tales of The Tragic Cripple, The Inspirational Supercrip, The Bravely Smiling Child, The Scarred Supervillain.

But you are a story still being told and your choose-your-own-adventure options are so much wider than the clichés written by people who haven’t been here.

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They can't imagine stories beyond tragedy or triumph so they don’t tell you about adaptation: the lives most of us live where we rebuild in a new world.

No ‘Brave Overcoming’, No ‘Recovering As Reward For Learning The Right Lessons’, No ‘Tragic, Noble Suicide Because Life Isn’t As Expected’.

Most of us just grieve And rage.

But we look around at where we are: we are all of us haunted by choices we’ve made and the versions of us on different roads.

We get to living.

Don’t let it turn to bitterness— like all grief, there is no 'getting over', just adjusting.

A different life, a different plan.

We go back to worrying about remembering to pick up bread in unhealed bodies.

It’s not as compelling. But it’s true.

You fold the losses into your life, build in the spaces left behind.

There is a web of absences: who you were, what you planned, the dreams you didn’t get around to, feeling rested after sleep, moving your body without thinking, believing the world would catch you if you fell.

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Because though your life is not over, Parts of it are.

Some things you thought defined you are gone forever and some things you swore you’d never do will become as common as breathing, which you will learn to do again and again, as many times as you need.

This is the scene where you touch your hand to where you scratched your height next to your brother’s in the doorframe, and leave the burning building before it collapses.

You can only take what you can carry and now you have to choose every moment— no action comes without a cost.

Every choice takes something else away and you just want to be able to breathe without counting the loss.

There will be a montage where you rebuild.

You will feel better.

And then: the flare.

The first time you go downhill you will feel worse than you do now.

The first time you feel the life you clawed back slipping away between weakening fingers you will believe this time it will kill you.

And then...

And then...

And then...

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You will come back.

Slowly, cautiously, you’ll begin to learn the cadence of your body: when you can push, when you need rest.

You’ll learn what you value and what you need to let go.

Your life is now a glory lived in the moments between sleep and fog.

You will stand on a cliff watching sunlight sparkle through sea mist, bright even when it’s not a clear day.

And eventually you’ll stumble, weary, into camp, find the collection of survivors, grizzled and laughing, sharing stories and food.

Stay and fight with us, because we are all of us lost and all of us found, and all of us relying on each other in a world of ghosts.

We will help you adapt.

Help the choices become swifter.

Your ability to weigh atoms of energy against each other will become an instinct.

You will decide which risks you can take.

You will learn the careful art of saving, shaving scraps of ability from each action.

You will become a masterwork of efficiency, living by a calculus you can’t explain but know deep in your aching bones.

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Real stories don’t end with the credits rolling.

Yours doesn’t end with the ones already written.

As long as you are here, there are scenes left to play.

You will make your choices and sometimes you will decide pain is a small price to pay for joy.

You might look at your beloved dancing in your arms and know the months of shuffling to come are worth that moment of music and grace, and years from now you will remember and know your choice was right.

I hope you have a chance to hear this before you get too far down that road laid out for people like us by every writer’s cliché ending, every sobbing ‘this is not living’ scene, fading to mournful black.

And you might not be able to hear me yet, but someday, when you feel you’ve reached the end of your story, I hope these words come back to you.

Because you will feel sunshine again.

Few people get the life they want.

We all make choices which narrow our options, and we still have good lives.

In pain, yes.

Exhausted, yes.

Angry at the world, yes.

But also in love, yes.

Reading a new book, yes.

Saw a new landscape, yes.

Changed the world, yes.

Still here, yes.

Still here, yes.

Still here, yes.

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Rest Unlearn the messages from your whole life about ‘fighting’, ‘pushing through’, ‘not letting it beat you’, ‘do more each day’. You need rest. Most chronically ill people push themselves to get back to normal too fast and it can cause a major loss of ability and a much longer recovery period. I was so desperate to prove to people that I was ‘trying to get better’ that I ended up housebound for years because I pushed too far, for too long.

Your body needs rest. You need to give it time to recover, and to yourself time to learn the new rhythms of your life.

It doesn’t need to be bed rest, or even home rest, but you do need to not be pushing yourself to increase your activity levels until you know how to judge your limits. Be as gentle with yourself as you can, and try not to treat rest as a prison. Get comfortable clothes, blankets, get pillows and cushions which give you enough support. Invest what you can in a bed or mattress which suits your needs. It's not 'giving up' to do these things. This is where you are right now, and improvement in your health won't happen without good rest.

See the ‘systems’ section for ways to manage your energy levels.

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See the ‘independence’ section for how to ask for help.

Sometimes you will need to push yourself past your limits, or want to because it’s worth it, and that’s ok but account for recovery time and learn the difference between soft and hard limits. Soft limits are where you will need more recovery time if you keep going, hard limits are where your body just stops functioning and you can’t move anymore. If you reach a hard limit, you may relapse and recovery will take much longer.

Doctors may tell you the opposite of this advice – many are very poorly informed on chronic illness management, and are often very sceptical of its existence at all. One of the biggest medical scandals of recent years is the PACE Trial, which fraudulently reported that Graded Exercise Therapy was a good treatment for people with ME, when it’s known to cause major relapses and worsening of conditions. It’s still recommended by doctors, only they’re trying to rebrand it as ‘Graded Activity Management’ to get around the NICE recommendations against GET. Ask other chronically ill people you know for recommendations for doctors who know how to manage complex cases (many chronic illnesses are complex because their symptoms affect multiple systems - you might have gastrointestinal, hormonal, skin, immune and other symptoms as well as energy loss, pain, and cognitive dysfunction).

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Systems Your energy is limited now, so you will be learning very quickly that things you thought didn't take much energy actually take a ton of decision making and information processing. A shower isn't just a quick pre-work habit, it's rapid changes in temperature and humidity, lots of things happening to your body at once, balancing, standing or sitting for an extended period of time, raising your arms above your head and bracing them, lots of changes in posture, changes again when you get out, posture changes as you dry, lots of textural input from towels and damp skin and air currents. It is exhausting, and sometimes it's the only thing you can do in a day. So it's time to build new habits.

First of all, offload as many things as you possibly can. If you have disposable income, cleaners and laundry services (even just for bed sheets and towels) make a massive difference. Work out which chores cost you the most energy and see if there are people who you can pay, in money or barter, to help you with them sometimes.

Unless it's something you love and which doesn't cost you too much, change your cooking habits so you use as much pre-prepared fruit and veg as you can.

Cook-from-frozen sliced carrots, mushrooms, diced onion, etc, along with tinned tomatoes, beans and pulses, mean you can still get a healthy and varied diet without needing to do a lot of chopping and washing.

Reducing decision-making helps too. Using the same brands which you know you can eat or don't irritate your skin, buying them in bulk if you're able to, having things delivered so you don't get overwhelmed by choices at supermarkets, can all help. If you find something which works, it's fine to stick with it.

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Unless you are on an incredibly strict budget, account for your energy when deciding how much time to spend looking for bargains or trying to find the cheapest option – sometimes it’s better to just go with what’s there and save your energy. It’s a valuable resource.

Set alarms for everything. To remind you to call the doctor, to take medication, to eat, to drink regularly, to call your friend, whatever you need to do. Brain fog will mess with your sense of time and your memory, so alarms are really useful to make sure you get things done (and use snooze until you actually get up and do it because otherwise your brain will tick it as done!).

When it comes to personal care, you're going to find your expectations change and that's fine. Get used to using washcloths as needed when you can't face a shower, dry shampoo on your hair if that helps you. Use facewipes and body wipes and whatever you need to feel ok and not end up hurting yourself.

Ask for help if you need it, especially with washing hair. Again, your time and energy are valuable resources, so choose what’s worth spending them on. Plan ahead, too – if you know you’re going out, try to wash your hair (for example) with enough time to recover between it and leaving (the day before is fine).

Have clothes which are comfortable, and which don't require too much fiddling with buttons, snaps or laces. You may find your gut health has changed what kind of waistbands you are comfortable in, and you're more likely to be sitting for much longer than before, so make sure your clothes aren't making things worse for you.

Essentially, anything which makes your life easier and less hassle is a good thing - it leaves you more precious energy for the things you actually want or have to do. Some things are worth doing even if they take time and energy, but you will decide which ones matter most to you and find ways to adapt.

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Wildfire This has burned through you like a wildfire.

Your carefully planned roads and meticulous buildings razed to scorch marks, ghosts of the landmarks you relied on to find your place in the world.

Your bones now made of warped steel, your heart replaced by a smokestained photograph of a night you only half-remember: the last time you felt at home in your body.

Your lungs breathe choking ash, gasping for clean air in a cloud of used to bes.

On your knees in the ruins, you will wait for the heroes to save you, but you've seen enough to know help doesn't come from where you expect it.

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It’s not a sterile dome which will save you.

Nothing can stop the fires from coming.

You will build and rebuild your life now.

Look to the people who have lived in this land, whose warnings were ignored but who still sing them.

Learn how to build fire breaks around your life: clear away the dried and dead branches.

Learn what you will let go to keep what is precious safe.

Build home in the shadows of the flames, knowing they'll come, knowing you'll survive.

And as the smoke clears each time, look to the new green growing from seeds spread by infernos: life which can only take root in the ferocity of fire.

It will always hurt to burn like this.

Learn how to live in the old rhythms of rest and renewal, of pain and loss, grief and the slow mending of new trees in an ancient forest.

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Doctors You are, unfortunately, likely to learn that most doctors do not have a great understanding of disability or chronic illness. There are a lot of very ableist, outdated ideas in the medical field, and very little comprehension of disability justice.

This is complicated by many different types of discrimination: 1. medical misogyny, which means women are not trusted to report their own experiences and are likely to have their conditions dismissed as attentionseeking, anxiety or stress; 2. medical racism, where people of colour, and especially Black people, are seen as trying to get pain meds, as lazy, or as antagonistic; 3. medical ableism, where other conditions make it less likely you’ll get appropriate medical treatment, especially mental illnesses; 4. fatphobia as fat people, especially fat women, may find doctors refuse to do anything until they lose weight.

If you are experiencing these (or other struggles) to have your doctor hear and believe you and your symptoms: try to find another doctor. You have a right to be treated with respect, and to proper pain management and support.

If you find a doctor who listens to you, who takes you seriously, who spends time discussing options with you and is dedicated to finding out better ways to help you, cling to them like a limpet. They are gold dust. They are so rare.

Learn from other disabled people how to advocate for yourself. It’s tricky: you can’t just go in guns blazing, because you risk being listed as non-compliant or antagonistic. You have to learn the skill of managing their egos while not letting them dismiss you or your symptoms. You shouldn’t have to. It’s

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ridiculous that this is a necessary part of being disabled, but it’s significant.

Wherever possible, take someone with you who you trust. Many disabled people buddy up with another, because it’s much easier to advocate for someone else than for yourself, no matter how strong you are. Discuss with them beforehand what you want from the appointment, so they can step in and push for tests, answers, or referrals if you lock up.

If you have issues with memory and/or fatigue, copious notes are your friend. Take notes with you to the doctor so you don’t miss anything you wish to discuss, and notes while you’re there. If you take a buddy they can act as scribe. And keep these notes for future reference: a health notebook is a handy tool for many and can track long-term changes you might not see otherwise.

It’s a hard one to learn, and don’t bring it out until you’ve exhausted other options because it’s a last resort after all else has failed, but learn this phrase: ‘I would like you to write in my notes that you have refused me requested treatment.’ This means there’s a papertrail for later if you have to make a complaint about missed diagnoses, or if you need to explain to another doctor what you have tried.

After a while, you almost certainly know more about your condition and potential treatments than a GP, so finding a doctor who will work with you if you bring in the evidence for potential avenues of treatment is a rare, but incredibly useful step. Make sure your evidence is as robust as possible, and be prepared with your arguments and questions for why you think it’s relevant. See the ‘Treatments’ Section for more advice.

Navigating the medical and care system is a job in itself. You have to spend a lot of time and energy chasing up appointments, researching, asking for help, fighting for help, fighting for justice. It shouldn’t be as difficult as it is, but working with other people who have experienced the inequalities of the system helps, and there are organisations who can help you in complaints.

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Faking Wellness You have probably heard a lot about people faking disability, and if you are chronically ill, may have been accused of it yourself (sometimes by implication rather than outright).

Fake disability is a vanishingly small problem, even when it comes to benefits and social security. It's much more of a problem that people do not access benefits they're entitled to and need because they're afraid of being seen as faking.

The UK Social Security system in particular is set up with the core assumption that everyone applying is committing fraud until proven otherwise, which has shaped how disability is understood in the rest of society. That more money is lost because of DWP error than because of fraud isn't well-known, and instead people imagine it's easy to get support.

Both the DWP and the general public prey on the inconsistencies of illness to prove you're 'faking', and wilfully choose not to acknowledge that illness is inconsistent. I can’t explain why I can walk around on one day but not another, or the complex calculus of hope and risk I work with when I decide to do something I really want to do even though I know it will cost me. To the outside world, it just looks like I’m disabled when it works for me, and not when I want to do something. I don’t talk about all the other times when I want to do something but can’t, or have to rest when I had planned to go out, or how lonely it gets.

When it comes to faking things, disabled people are much more commonly faking being well. We put on a great show as the person who needs a stick or a chair but is otherwise fine. We pretend we're not always in pain. We pretend there won’t be a cost for my choice to go out with friends. We fake being healthy.

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The reality is that, what many abled people decide is 'faking' is usually just 'not seeing the full range of a person's experience'. They probably see them carrying shopping or laughing on a night out, but not any of the recovery or the days when they can't do that.

Only my partner and my mother see how bad it gets for me. If anyone else sees me, by definition they're seeing me on at least an ok day.

However, this is all hard to express on a form meant to catch you out. When you are dealing with authorities who are trying to prove you are faking, rather than trying to find the right way to support you (the latter do exist), there are a few things to keep in mind: 1. Make a mental health plan before filling out the forms. Steel yourself for it, and tell some trusted people you're going to be going through it, and tell them you might need support and to watch out for you. These forms can be exercises in humiliation and degradation, and make you focus on everything you have lost and all you can't do. It can be devastating to go through, and it's ok to prepare for and access support.

2. See if there are any services nearby to help you fill them out. Many mental health hospitals have people who will help you, because they've had so much experience of people losing years of progress after going through the system without support. The Citizen's Advice Bureau might help, or local disabled people's organisations.

3. Do not be proud when filling them in. Tell them about your worst days. Be clear if your condition is variable, but make it clear that your worst days are not rare. Crucially, write about how you are without the many systems you've set up to avoid dealing with it. For example, one of the gatekeeper questions is often 'can you feed yourself?' They are looking for the ability to grip with pressure and fine motor control. If you have changed your diet so you only eat food which doesn't need to be cut up, the answer to this is still 'no', because in a normal meal you would need help.

4. Your right to this support is not, or should not be, dependent on whether you've 'paid in' to the system enough - you are a human being in a country rich enough to have an infrastructure which supports people, and you need support.

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After The Flood The rage will be saltwater: it will pour out of you in waves.

You will float in an ocean of grief for all you have lost, for the choices you now have to make.

You will hate every cell of your body for betraying you.

You will be eaten alive by shoals of sharp-toothed hopes, your blood ribboning out into darkness attracting predators armed with promises who’ll offer you answers and cures, and you’ll let them feed on your muscle and bone because right now anyone who sees you seems like a friend.

Anyone who holds your hand and tells you ‘yes, your pain is real and this is wrong’ can sell you anything, because you’ve been swimming in dark water, fighting for breath in unknown currents; the nets supposed to catch you turned out to be strings of useless platitudes spun with disbelief and dismissal.

You’re learning that the water is full of old landmines and the rage just keeps rising and the grief is sinking you, and god, you’re so tired trying to get to shore...

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You will find us, though: the mermaids who make this our home.

You know, the grief doesn’t dissolve but it weighs less underwater.

You’ll build reefs out of the bones of your old life, to create calmer waters.

This life is not the same as the one you lived on shore.

You are not the same person; you have to relearn your body, your flashing fishtail, how it moves, how it feels in your new world.

Let the rage hold you up, volcanic bubbles from deep vents take the weight from your aching bones.

Let it show you the world as it is instead of waiting for some shimmering day when you are fixed and can start living again.

This is your home, all yours to explore, and it is turbulent and beautiful.

Life thrives everywhere down here: creates light in deep, dark waters, plays with bright colours in warm shallows, clings to the worn edges of the world and breaks, glittering, for a few ecstatic moments, into the sunshine.

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Independence What we have been taught about what ‘being an adult’ means is mostly ableist, typically capitalist, nonsense. The notion that, in order to be considered a responsible adult, you should not need anyone else is ridiculous. Everybody needs other people. Maybe a dozen people on earth don’t rely on any other people, and their lives are unlikely to be ones you want to emulate.

We rely on other people to grow our food, to bring it to shops, to staff those shops, to create the tech we use to talk to each other, to make sure electricity comes to our homes, to make sure we have homes. We just draw an arbitrary dividing line between those needs and the ones where we rely on other people to help us get dressed, or eat, or clean. And it is arbitrary.

We are taught that needing other people’s help is undignified, weak, embarrassing. It is not. Learning how to ask for help, and how to accept it, is one of the most important skills you will need. It takes time to learn because its opposite is reinforced all the time.

Most people who care about you want to help you if they can, but they might not know how. Asking people if they can carry a bag for you, or give you a lift to an appointment, or help you make food, gives them something concrete to do.

If you ask someone for help who isn't your carer, be gracious but you shouldn’t have to be submissive. You are not giving up any pride in acknowledging a need. They are not obligated to help you, so don’t get angry if they say no, but asking for help should not set up toxic power imbalances in your relationships.

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In carer/cared for relationships, some people end up feeling like they can’t assert their needs or boundaries, and that’s dangerous - try to keep clear communication open if you can. If you are able to, use formal and outside assistance where those boundaries are clearer if you feel that would be healthier. However, care is often scarce, and variable, so you'll likely need a combination.

Set up communal supports if you can. Mutual aid is brilliant, and a good model for smaller group support. Some people might be able to give lifts, some people might be able to cook, some people might be able to spend time chatting or playing games with people. These don’t work for everyone but if you can find ways to pool and share skills and energy outlays, it can help you all.

Independence is not about not needing anyone, it is about autonomy. If you are able to make your own decisions about what you want to do, where you want to go, and what to do with your body, then you are independent whether or not you rely on other people to help you do those things.

Similarly, dignity is not based on not needing help. This is where there is often a difference between people who have been disabled since they were young and people who acquire disability later on – the latter group has internalised all those messages about how needing help to clean themselves or do personal care is ‘undignified’ or embarrassing. People who have been disabled all their lives usually know it’s just part of life, and being embarrassed about it doesn’t help anyone.

We have the right to an independent life, like everyone else. The barriers which make the world inaccessible to us, and the lack of support systems to give us the same opportunity to thrive, are not reflections on our level of maturity or responsibility.

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Treatments You are almost certainly not going to find a single, easy cure, unless you get very lucky.

What you will develop is a patchwork of treatments which each improve your life a wee bit. It takes a while, and there's a lot of back and forth and trial and error while you find things which work for you. It'll likely be a combination of medication, some types of exercises, mobility aids and lifestyle supports, and whatever else you find gives you relief.

Some things to be aware of - if you take anti-inflammatories, make sure you're given something to protect your stomach too. Not taking pain medication isn't a sign of moral strength or goodness. It's generally good to not take more meds than you need, but unmanaged pain is a serious health problem in itself and should be treated as such.

If your pain is still impacting your ability to focus, your emotional state, etc, then ask for more help.

Don't be afraid to use mobility aids. People are often afraid of the stigma of them, and especially with wheelchairs, there's a societal belief that starting to use one is an admission of failure by 'accepting that you're disabled'. You are disabled. Wheelchairs are freedom. They save your energy, so you can use it for things you want to do. They mean you can go see friends or get stuff done with less pain and exhaustion. You don't need to use them all the time - I only use mine now for holidays or days when I'd need to walk a long way, and the rest of the time I use a walking stick.

Decorate your mobility aids! Get a cool looking stick, use stickers on your wheelchair, tie ribbons around them, whatever you want to do which doesn't interfere with its operation. Make them a point of pride. If you're going to use them, they may as well be awesome. Getting my vine-covered walking stick changed how I saw myself so much.

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Use whatever you need to in your home and life to make things easier. All those things you see ads for with people looking ridiculous and people say 'who would ever need that?' are made for disabled people. Jar openers, joint supports, automatic can openers, whatever you need. Don't ever be ashamed of what helps you live your life.

Supports aren’t just for cooking, cleaning and moving! There are resources for having a healthy sex life if you want one, including a lot of useful equipment which can help avoid injury or take some strain off your muscles and joints.

Anyone with a chronic illness becomes a target for charlatans selling 'cures'. Some of them believe what they're saying, most know it's a racket. They look for people who are desperate for answers, desperate for hope, for anyone to take them seriously. They will frequently talk about the evils of the pharmaceutical industry and the money it demands, while trying to sell you treatments for hundreds of pounds themselves.

Unfortunately, it is effective specifically because doctors are often so dismissive - there is relief to be found in someone telling you that your pain is real and they can help. In sitting with you and listening to you, and empathising.

Far fewer people would end up losing so much money to these people if medics were more able to understand chronic illness. It is not the fault of the disabled person – it’s not being ‘stupid’ or ‘gullible’ – sometimes you need something to cling to.

That said, there is a balance to be found. Most of us end up using some combination of vitamin supplements or alternative treatments alongside the medical ones, because some of them can help a wee bit. It takes practice to see the line between 'a healthy skepticism of medical ignorance of disability' and 'scientific denialism', which automatically distrusts medical help but falls for potentially very harmful 'alternative treatments'.

The questions to ask are – 1. is this person offering a realistic treatment, or a cure? If the second, they are not being honest.

2. What quality control is done on anything I'm expected to put in my body?

3. Can I afford the outlay to see if it helps?

4. What are the risks associated with this treatment?

It's always worth going to Disability Twitter and asking for insight - we usually have a lot of experience telling the difference between scams and potential additive treatments.

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Drift It's easy to hate your body on days like this: Every muscle fibre seems made of shattered ice; you can only think in wisps of disappearing fog.

It's easy to hate what your body has become.

To scream splintered curses, trying to force it back to the easy movement you Wore lightly.

You never rejoiced in the soft flow of your limbs until they hardened to a glacier carving through your bedrock.

It's harder to find peace with the limits, the swift and ruthless lessons of cause and effect.

The constant weighing of cost against cost.

It's harder to learn to plant flowers at the borders your exhaustion has built, wait through the long winter to see what survives to blossom.

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It is hardest to love your body when you stare red-eyed at the ceiling spinning enough energy to move out of scraps you find caught on your barbed wire joints.

Hardest to see your body trying to keep you alive, trying to protect you from ice storms, to warn you of danger as you step to the cliffs, to call you back from the edge.

Hardest to love it for not giving up on you, however many times you think it has left you for dead.

It is trying, begging you to rest, to stop, to survive.

It is hard to love your body and maybe you never will.

Most of us live in an uneasy truce but sometimes we can feel laughter rising like the sun in spring.

Sometimes a cat will rub its face against your hand while you half-sleep.

Sometimes you will feel the cool meltwater, the shiver of a warm breeze, or your lover's hand, and you will be glad you stayed.

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Do I Count?

Disability is widely misunderstood. It isn't diagnosed by a doctor, there isn't a 'register', it's all about how your life is affected by your condition. If you find it makes your life harder to navigate, physically or mentally, that is disability. There are so many different ways to be disabled, from the obvious physical impairments to much more hidden conditions like memory issues, executive function (being able to get yourself to do tasks in an organised way), energy depletion, etc.

You don't need a diagnosis to be considered disabled, because access to diagnoses is affected by systemic inequalities and specialisation access. If your symptoms are affecting your ability to live your life, then that is disability.

It's much easier to get supports with a diagnosis, but you will find it might change over time (EDS, for example, takes an average of 15 years to get diagnosed because of lack of awareness, medical misogyny and lack of research, but many people with EDS are diagnosed with depression or fibromyalgia before that).

Your ideas about disability are likely informed by society's approach, which is referred to in disability justice as 'the medical model of disability'. In this, disability is an individual problem, an issue of your body or mind being 'broken' and the only aim is 'fixing' it.

Disability is always a bad thing, always the worst possible outcome, and you are expected to submit to any and all treatments to get yourself back to 'normal'.

Disability activists, once they had the ability to self-organise, created the Social Model of Disability, which asserts that people may have impairments and different physical and mental conditions, but it is the inaccessibility of the world which is what disables us. A world which creates ramps instead of making people go through multiple dangerous surgeries in the aim of making them walk, which gives flexible working hours instead of expecting a person with an energy-limiting condition to either do nothing or work standard hours, is one which has adapted to disability rather than expecting the disabled people to be fixed before being allowed to have a life.

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Chronically ill people are involved with deepening the ideas of the Social Model to account for the fact that many people do want to have cures, and that no matter how well the world adapts, some things will still be out of reach for us. However, those don't undermine the Social Model, they just require a bit more nuance than it often has.

Referring to yourself as disabled is not ‘giving up’ or ‘limiting yourself’. It gives you power to name, and therefore deal with, the ways society still sucks at being accessible. It gives you a baseline to start from in building a good life.

People often resist calling themselves disabled for one of two reasons - first, because they think it's a bad thing and a point of no return, where they have accepted their new life rather than expecting to return to 'normal. It's understandable, and each person has to come to it on their own timetable, but once you know it's not the end of your life, it's easier. Second, because they think they're not disabled 'enough' to justify the label and they don't want to impose.

A lot of disability activism is telling people they're allowed to call themselves disabled, and are part of our community. There is no hierarchy of disability, because as soon as you draw a line between people who deserve help and people who don’t, that line will shift.

Each person's experience is different. Other people having more barriers doesn't mean you don't have any.

There is no hierarchy, but there are different ways to be affected. Don't be tempted to compare your experience to other more obvious conditions and say 'people don't tell wheelchair users to just think positively' or 'people don't tell people with cancer it's their fault for not trying hard enough', because they absolutely do. People say all kinds of nonsense you would be shocked at. Each type of condition has its own challenges.

You don’t owe anyone the details of your condition, especially if they’re trying to get you to justify why you need support and they’re not the person deciding whether you get it.

People will ask out of curiosity, out of hostility, for all kinds of reasons, but it’s good to learn early that the details you give are your choice and it’s useful to teach people that it’s not an appropriate question, especially if there is no prior friendship or sharing of personal information. There are lots of stigmas associated with various types of disability, so choosing what venues you share that information in is good practice.

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Interstellar Someday soon someone will tell you you have given up.

You are not trying to get better.

To them, you are a comet hanging still, silent in the autumn sky.

From the ground it looks like you are waiting frozen and stuck in the dark.

They don’t see it through your eyes, your relative perspective: you are moving through space at a hundred thousand miles an hour, streaming incandescence as you set yourself on fire.

Fragments of your life ablaze, the pieces which no longer fit tailing behind.

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They have forgotten who you are, and only see what you mean for their own lives: a harbinger, an omen.

They don’t want to know you can lose everything out of nowhere.

A sudden strike to your body, leaving ash clouds in your head and craters in your life.

They don’t want you to remind them, each time you circle round: nothing is permanent and safety is an illusion.

They need to believe it would be different if they had been flung out of their system in an orbit they didn’t plan.

You are a comet leaving your world behind, streaming through the dark, carrying the stories of other stars and life hidden away in your fractures to anyone willing enough to see your bright arc across the sky.

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The Disability Community Disability is such a huge umbrella that none of us understand all of it; we’re all learning all the time about what different parts of the community need, where the conflicts are, how to manage them. We get it wrong sometimes, and we have to be willing to apologise and know we’re trying to be better than we were yesterday.

Disability intersects with every other form of marginalisation. Disabled POC are much more likely to be over-policed, treated as threatening, have excessive force used on them. Disabled women are vastly more likely to be victims of sexual assault or domestic violence. Women with mental health conditions are more than four times as likely to be sexually assaulted, and disabled people rarely see justice because they are not treated as ‘credible witnesses’. Disabled children are vastly more likely to be bullied and to experience long-lasting trauma from their treatment.

Parents and caregivers of disabled people are important allies, but they should not be the spokespeople for disability and should not dominate conversations about accessibility. Interview them on issues of caregiving, but find disabled people to talk about disability. Being next to disability is not the same thing as experiencing it, and the dominance of caregivers-as-heroes covers up a lot of abusive practices and risks. You have the right to make your own decisions about your life, even if you need other people’s support.

Being disabled does not mean you can’t hold other forms of biased opinions and behaviours. It doesn’t mean you can’t be challenged for racist, misogynist, homophobic, transphobic, etc, comments. It also doesn’t mean you can’t be ableist – when you first start looking into the online community, it’s worth reading a bit, starting out slow, and be willing to learn and be challenged. The same inequalities in the general world exist in the disability community, and it's up to all of us to challenge

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and dismantle them.

One of the practices we try to do because we know each others’ time and energy are variable is to give content warnings for subjects which might trigger trauma, like suicide, eating disorders or sexual violence. These are typically not about avoiding those subjects completely, though for some people it is, but more about being able to steel yourself or come back to it when you’re in a more stable place.

We also will often ‘ask before asking’ – send an advance message saying something like ‘I have a question about x subject, do you have the energy to deal with that?’ Most of us feel an obligation to respond to people asking questions or for favours, and so a prequestion, to check if we have the emotional or cognitive resources and to reassure us that it’s fine if we don’t, goes a long way towards a healthier model of interaction.

We also try not to offer advice without asking – you’ll learn that you get a lot of unsolicited, unreliable advice from very well-meaning people who tell you to try yoga or turmeric or other things.

However, in the community, we often have learned experiences other people might not, so sharing information is still useful. Check to see if they’ve specifically said ‘no advice wanted’ (if they’re just venting), and if not, say something along the lines of ‘If you are interested in recommendations, I can offer my experience, but it’s entirely up to you’.

It’s worth finding people you trust to ask more controversial or difficult questions, who have made it clear they’re open to being asked.

Remember that most of us are dealing with varying levels of exhaustion and trauma, so our reactions (and your reactions) won’t always be perfect and graceful. We muddle through, as long as we’re willing to be humble and have conversations in good faith.

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Alexandria Unburned You are Alexandria unburned.

Your blood runs dark with stories we left behind, hunting the monomyth.

Your blood sings with forgotten archetypes: the stories which once showed us how to live with uncertainty, how to breathe in pain and find peace, how to see dust on the horizon heralding the end of all things and still plant flowers and sing to your daughters.

You have not been told all the stories, but they flow in your veins like ink in the Tigris.

From the first step out of the waters to the first words around a fire in the long dark, to the magic of walls carved with myths, thousands of years under sands, to Antigone at home on the streets of Ferguson.

And still there are more to tell.

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Society is just another story we tell each other about how to live in this world.

Listen for echoes in our languages, whispers of those who survived to add their histories to the hidden archive.

We have lost so many to the monomyth, as if one empire of archetype could hold everything we are.

The hero's journey is not the only tale and someone has to be the first to take the threads of the world and weave a new genre into being, for all the people afterwards to hear and know: yes, you see me; yes, I know myself at last.

Your blood glitters with a story yet to be told.

Destroy the monomyth.

Build something new from the wreckage.

Your blood runs dark with stories: you are Alexandria unburned.

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Lastly...

Your life changed when your disability entered, but it did not end.

You can be happy, fulfilled, and joyous. You are still a marvel and a whole person and the world is better for you being in it, even if your entire world is a bedroom.

There are pockets of wonder for you still to find. People still love you. Your life can still be amazing.

I’ve covered a lot about how much struggle exists for disabled people, because it helps to know. But that is never the entire story. You write your own.

Make it a good one.

Contact https://linktr.ee/FionaRobertson https://graniteandsunlightpoetry.wordpress.com/ 35

Acknowledgements This could not have come to life without a village of people.

First of all, thank you so much to Mae and Hanna, and Hysteria, for creating a feminist, inclusive, nurturing space where I felt brave enough to speak, and then for encouraging me to apply for Amplify.

To Callum O'Dwyer for his editing and advice on both the poetry and the focus.

To Lynne, Catherine Caine and all the people who have added notes and given feedback with fierce love.

To Dr T Antoff for their support and editing, and to them and Bonnie Rex for being our people.

To my Book Coven for keeping me on track when politics threatened to swallow me.

To Mum, for everything, but especially the books.

To Doug, for being you, and being with me through everything.

To Taliesin and Sprite for being fluffy chaos demons.

And to everyone else who has kept me going, given me support and love and taught me what I need to know.

Graphics Created in Canva Pro, with thanks to Pexels photographers Feyza Demirci, and Deep Rajwar for their water and fire photos.

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Your Life Is Not Over A Book Of Apocalypses And How To Survive Them (A Guide For Newly Sick And Disabled People) Becoming disabled can feel like the end of the world, because we live in one which does not give us the knowledge we need to thrive.

There are so many things I wish I'd known when I first got sick 20 years ago. We shouldn't all have to learn this on our own.

This is a mix of practical advice and poetry, because in my experience, there are some things which need poetry to be heard.

Not everything will be relevant, but I hope you find some useful things. If nothing else, I hope you get some reassurance that your life is not over. You still have a story to tell.