You wouldn’t talk about a person with cancer like that… Or would you?

“You wouldn’t talk about a person with cancer like that so why do you think it’s ok with mental illness?”

As both disabled and mentally ill may I suggest this bullshit dichotomy die in a pile of thermite? I keep seeing it in stupid memes since the Cambridges decided it’s now “ok to say” (to who? It’s not like funding is there for the services, if we even feel safe or supported seeking help).

People do talk to and about disabled and sick people negatively. This myth that it somehow becomes completely unspeakable when our health is weaponised against us is just that, a myth. We are told it’s our own fault, that we’re just not trying, not positive enough, that just need to drink kale smoothies and take a multivitamin.

People with cancer who smoke or smoked never hear the end of it, people with lifestyles judged morally dubious by some get their illness blamed on that, being too negative or cynical is seemingly a big cause of cancer, spinal cord injury, genetic disorders and all inbetween judging from what we get told, as if the body is manifesting that negativity into substance.
I’ve even heard that owning a set of tarot cards is why body doesn’t produce collagen correctly and my spinal fluid got lost one day.

Don’t try that fad diet your late aunt was on that involved only eating orange coloured food and banana milkshakes while sat under a waterfall with crabs in your hair? Then you obviously don’t want to get better. If you don’t try then it’s your own fault, isn’t it?
If your doctor’s told you this is it, for life, it doesn’t get any better and you don’t keep holding out for that miracle or breakthrough then well… Of course you’re not going to get better with that negativity. You shouldn’t be just trying to get on with your life as you are but rather remaining ever hopeful and looking for every new treatment.
You don’t exercise? Exercise cures so much though! It’s amazing what getting active can do. If you don’t do it then how can you know it doesn’t help? What do you mean you can’t physically do it without being in agony? It produces endorphins! Well fine, stay like that.

The in-joke you may see come up on my feeds about small breakfasts? It came from a friend being told their genetic condition, the same as I have, would get better if only they had a small breakfast every day. The suggestions being brought up almost always has a failure to comply to being implicitly blamed.

“So what’s wrong with you then?”
“Not enough small breakfasts, apparently”

As well as having physical disabilities I am mentally ill. It’s something I’m very open about and you can read about at length here, and though I’ve received more support, particularly in crisis, for my physical health problems than mental health ones, I’ve also received more expectation, judgement, blame, and bullshit for them too.

Our experiences with disability shouldn’t be erased and pitted against each other to make a point about common acceptability of stigma and shame. It should be considered unacceptable regardless.

Sport and ‘ability’: Am I no longer disabled then?

[Cross-post from my Facebook]

I saw a photograph taken by @inkysloth which was posted to Twitter. It’s of a paralympics advert that has recently popped up in New Cross, and it’s one causing a stir among disability circles (and a lot of annoyance from others in disability sport).

Paralympics billboard by channel four. It shows two Paralympians doing quite normal things, with 'disability' written across it. Only the 'dis' part is crossed out.

I was going to leave this with just my comments elsewhere but it’s bugged me (as I know it has a lot of people).

I was what you could loosely call an athlete, and I’m working hard to get back there.. I’m good at what I do, swimming. I’m also pretty disabled. Does this mean I’m not disabled anymore? Have I ‘risen above it’ like this suggests Paralympians have?

Like fuck have I.

A lot of very intensive training, designed to work with or around things I’m affected by, went into getting me to that point. Some very good coaches gave their time and assistance in assessing how I could get it right and improve. In places my disabilities are even utilised. That’s how it works… It takes figuring out and incorporating. Finding what fits.
When I get out the pool I still walk like a toddler (at times I can walk), still use mobility aids, and still can’t do a lot physically. I don’t magically get fixed because I can do intensive not-drowning well.

Limbs don’t grow back, illnesses don’t always vanish, but there’s another point… Why is my athleticism considered less than someone able bodied? Why is any of ours? The whole narrative of ‘overcoming’ disability, becoming ‘as good’, is drenched in that message (see also the grimness of being ‘inspiring’)

I was a member of the disability club where I swim, and there were some amazing swimmers there. In their own right. WITH their disabilities, and with no need to compare them to people who are able bodied, or anyone else. Their achievements shouldn’t be judged by a physicality they do not share.

I’m fucking proud of what I’ve achieved in swimming, as a disabled person. When I left the disability club for masters (a group that doesn’t focus intensively on it/mostly non-disabled), my disabilities were still a part of what I was doing, still taken into account, and things I had to consider constantly while I swam (and it’s a lot of thinking)

Disability doesn’t stop because we achieve things, and to suggest it isn’t just insulting but erases a big part of us; of our lives, our experiences, and our training.

(And yes. I know ‘but they mean Paralympians, not you’, but ableness is used as a yardstick for us constantly. All of us. This doesn’t help. Those Paralympians are still disabled too, they still got to that point with their disabilities, and they wouldn’t be Paralympians otherwise)

Mental health, poverty, and the devastating erosion of the social safety net.

Content note: This essay contains mentions of suicide.

There is a summary at the end of this post for anyone who struggles with the full text.

Today it’s come to light that Iain Duncan Smith, the Minister in charge of the Department of Work and Pensions (DWP), has decided not only to retest everyone on Employment and Support Allowance (ESA) and discount many of those with mental illnesses like depression and anxiety, they also plan to stop extreme psychological distress from being counted in Personal Independence Payments (PIP) assessments. (Source) (Source that ISN’T the Daily Mail)

This means people with psychological disorders that disrupt their lives to an enormous extent will not get the support they  may desperately need.

Rather typically of this Conservative government, they previously stated they would be cutting the qualifying distance in the PIP assessment in order to be able to afford the support for people with mental health conditions. This means a large amount of disabled people were kicked off the benefit for support that is now being withdrawn, apparently. It was a way to bring in more cuts and nothing more.

People are so scared about what their futures hold, and then going to be staring at the possibility of losing all support while still being incapable of working.

This is going to cost lives.

I have lost a lot of people in recent years, and I’m already seeing people discussing potential suicide if their reassessment comes up and it’s too much for them. I see a risk of a knock on effect which affects a wider group, those with both physical and mental health problems. I’m genuinely concerned that I may not make it through another application. Last time nearly killed me.

A long standing complaint of all of these changes is reassessment of people who have no hope of recovery. I personally have two conditions and neither are going to get any better. Over time my health will go downhill. I also have mental health problems which can be extreme at times. I need a lot of assistance throughout the day and will continue to, so what on earth is the point? Ah yes, just keep making changes and reduce the number on it regardless of the consequences.

I expect we’ll begin seeing a lot of appeals too. Appeals tend to cost the government an enormous amount. It’s worth remembering that at some points in this government’s term in power, enormous claims were made about 75% of people on ESA being fit to work, based on some dodgy statistics because Atos were just refusing everyone. A very large portion of that 75% actually had their decision overturned, at great expense of the state who had to pay Atos per person fit for work and the state for the cost of the appeals. Is it really worth the cost to both the state and the wellbeing of sick people? It’s costing a fortune.

At times it appears as though the only way you can get through an assessment and be treated with humanity is by pure luck. Some incredibly disabled people have been denied assistance in recent years and the government, far from attempting to ‘lift people out of a culture of blah dependency blah blah’ they’re placing them in poverty and risking homelessness.

A thing I find very disheartening, aside from the lives that will most certainly be lost as a result and impending poverty for so many, that we have so few helping to fight for us. We can’t easily organise, march, and petition. We get passing recognition but little besides that from so many activists. Just look at how long we’ve been fighting for a cumulative impact assessment, the WOW petition has taken a lot of people trying to bring attention to it for a very long time.

When we make noise, the most we can usually hope for is a Guardian article and lots of ‘if they’re so disabled, how are they marching?!’
We need people who are able to march with us, to petition with us, to get our voice heard and bring attention to the egregious behaviour of this government. Disability and mental health issues don’t make for sexy campaigns, there’s no way of making it palatable. Issues of disability are so ignored in this country, and most media attention we get is to criticise us.

The changes they’re making, I suspect a media line of mental illness being over diagnosed or a lot of implications that it’s a character flaw will emerge. Very much downplaying the severity of it, as well as making claim that those with mental illnesses are just getting more support after the £1bn ‘investment’ (it’s not new money, it’s just been moved) which is why the reduction. Alarm bells are ringing, loud and clear, and they sound fascist.

We’re all living in utter terror, always worried about that brown envelope coming through the door that could spell poverty/homelessness. People with mental health problems, rather than being able to focus on getting better in order to get back to work, are having to panic about impending judgement looming over them, threatening to throw their life into turmoil.

We already have to survive on so little. Financial stress can be devastating on it’s own. When you’re already having so many problems with health and living on a low income (as most on these benefits do), the idea of someone coming and taking your last lifeline away is terrifying. If they fail to take any evidence into account, as they often do, you can lose everything.

As I’ve stated above and will again: This will kill people.
The UN’s human rights investigation into our government cannot come soon enough. We signed up as a nation to the convention on the rights of persons with disabilities and we are currently doing everything we can to avoid any responsibility while withdrawing desperately needed support.

I pray they reconsider but sadly I don’t see it happening. Call me pessimistic but frankly I fear they see us as barely human, they won’t care.

Summary: Iain Duncan Smith plans to not only retest everyone on ESA (Employment and Support Allowance), but limit both ESA and PIP (Personal Independence Payment) when it comes to people who are debilitated by mental health problems. I am expecting stories to appear that denigrate the mentally ill, and I don’t expect there to be an enormous uproar with big protests, but rather a big news story for a day and then dies down to a simmer. It will go ahead, and people will die because of it, being unable to work and having no access to disability support.

Welcome to the Bendy Zebra Club!

Many of the people who follow me on twitter and on here will know that I’m not in the best of health. What many don’t know is in what way, what’s causing my problems and quite how much they have impacted my life. You see I have both syringomyelia and EDS, and best guess is that the latter may be responsible for the former though “who knows?!” as my neurologist once said. In truth I’ve been wanting to write more about them for some time, syringomyelia in particular is incredibly rare, affecting (according to 1966 study) 8.4 out of 100,000 people. The form I have affects less than one percent of cases. EDS is nowhere near as rare, but it is still very uncommon, or at least not commonly diagnosed.

Mild extension of wrist and elbow

A lot of people have great difficulty when it comes to getting a diagnosis, and I am no different in that regard. Many GPs don’t recognise the symptoms, and even a lot of rheumatologists are not well versed in it. This makes it being discovered as a cause for the problems a person may be having very difficult indeed, and many people that I know with the condition have had to do their own research and presenting it to a GP in order to get anywhere. This of course brings up it’s own issues, both surrounding self diagnosis and the potential for frustration if a GP still refuses to refer.

I’ve heard countless tales, and have my own, surrounding all of these problems. I also know a good number of people going through it right now.

Hyperextension of thumb and wrist

It’s not been a great day today; from the moment I woke up this morning I’ve been in considerable pain and oramorph doesn’t seem to be touching it; such is typical of EDS. With hyperflexible bodies and predisposition for frequent, if not constant dislocations comes a pain that few painkillers can do anything to dull. As neat a party trick as it is, a ‘normal’ body is certainly something I wish I had.
EDS is a syndrome caused by having collagen which didn’t form quite right, and I like many other people with this form of Ehlers, also have a natural and bizarre high tolerance to opiates, a difficult time with NSAIDs, and no other real choices.
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Fingers hyperextending at the knuckle joint

The photographs in this post are of me taken a little over a year ago. They’re some examples of hyperflexibility can come with EDS type 3, or joint hypermobility syndrome (I should be clear here, so as to not leave people worrying; you can have joint hypermobility without issues such as pain, dislocations, skin issues or other stuff. So if you recognise these examples in yourself it’s not necessarily indicative of EDS). Other things included in type 3 which are or have been present in my case are:

  • spontaneous or heavy bruising,
  • odd ‘scars’ on the skin which look like – but aren’t – stretch marks,
  • patches of skin which is velvety soft,
  • folds in the upper eyelids and at times under the eye
  • Scars leaving behind a silvery sheen and can take a long time to form,
  • cuts, while healing, can be very discoloured
  • Raynaud’s syndrome (incl. Livedo reticularis)
  • high palate of the mouth, causing small jaws and overcrowding of the teeth and migration
  • advanced early onset periodontitis, jaw infections and loose teeth
  • splaying of the toes
  • ankle supination or pronation
  • fragile/thin/translucent skin
  • A whole bunch of other shit

I have type 3, hypermobile type, and also thrown in for extra fun is some type 4 crossovers. I’ve had 8 teeth removed, with the remainder wired in place, orthotics to prevent ankles supinating, wrist supports, a bite riser to alleviate night-time jaw dislocations, I’m an expert at putting my own joints into place after dislocations, I’m covered in strange scars and marks that don’t necessarily have a cause, much of the skin on my body is not only bizarrely soft but virtually see-through.

Type 4, which I have very, very mild symptoms of, is commonly called ‘bleeder’ type. I bleed, oh do I bleed. I don’t have to apply pressure or even move to find myself covered in bruises, if I’m cut it takes a very long time to clot, and while I was fortunate enough to miss out on cardiac issues, I unfortunately got the menstrual ones.

I had to fight very hard to get a diagnosis at all. I’ve known for a few years I had it. One of my parents does, 2 of my siblings do, other relatives do.. It’s not rocket science to put the pieces together and finding they fit.

When the pain started to get beyond what I could handle I was around 9-10 years old. My knees had been ‘popping’ [subluxing] and I’d been seeing specialists for it at a local hospital, told that it was down to having ‘flat feet’ and ‘inverted hips’. By the age of 12 I was investigated for rheumatoid arthritis, only to have the specialist laugh when he saw me move and say ‘nope’ and suggest fibromyalgia. After a lot of fighting to get an answer, in the end I was misdiagnosed with fibromyalgia and M.E. Misdiagnoses that still get brought up with doctors today and it has impacted my care at times. There’s a lot of controversy surrounding them as diagnoses within the medical community still, and despite not being present they are still dredged up for reasons I cannot fathom.
I’m now 27 years old, my diagnosis was confirmed late last year by a rheumatologist trained by the incredible Prof G, the UK’s only EDS specialist. To get that appointment with her has taken me almost 3 years, and it took me listing my symptoms, looking at my scars, EDS lines, skin, eyelids and a few examples of extreme hyperflexibility for her to sign off on it. It’s been 16 years of fights and wrong turns, poor decisions, and most of all self-doubt. I’d asked several GPs, over and over again, to allow me to see a specialist only to be turned down. “Well they’d only offer physio and pain relief..” completely missing the fact that illnesses which are an enormous part of your life, which impact every choice you make out of self-preservation and manageability, are a part of who you are. The uncertainty in itself was a struggle. I’m a bendy, it’s a part of who I am and it will forever impact my decisions. There were also the cardiac investigations which may not have happened were I not to push, access to hydrotherapy and pain clinic, ongoing access to physiotherapy instead of a few terms of it.

It’s been a long road and a stressful one, and like so many others I am so relieved to discover that, despite all my self doubt, I wasn’t wrong. The pain, the dislocations, it’s all there and all related. It also ties in greatly with my neuro issues and could potentially give answers for Dave in future, but without the diagnosis it’s unlikely to have a correlation noted or taken seriously.

Splayed toes and translucent skin

Regardless of the state of my body and all it puts me through, I will admit that I’m proud of myself. No longer distracted by so much, and a fight in regards to health is so, so much, I’m able to look back and see all I’ve accomplished with it being there and affecting so much

I also feel incredibly lucky that, while going through a struggle to diagnosis and found out exactly what is wrong with my joints and body, as well as through the challenges of daily life, I have met such an incredible group of people. Other bendies, other activists, other people just like me. People who can joke about dislocations, laugh about reactions people give or pain or wheelchairs. Who I can moan about ableism to and they can share the same with me. It’s my journey with EDS, in part, which has caused me to meet some truly inspiring individuals who I gratefully call friends. And I will forever be thankful that I’ve had that chance to meet and share with them.

Edit: A note from a most wonderful sloth on why it’s bendy zebras

Because in the medical world, they are taught that if they hear clacking hoofs, they should expect it to be a horse. But occasionally, it’s not what they expected and it’s a zebra – Basically a rarity. So anyone with a rare condition is considered to be a zebra. The EDS community have taken on the zebra as a mascot as a result.

Revised 13/01/2016

Explaining Dave; My journey with Syringomyelia

As many people who read my blog will already be aware, I have a number of health conditions. A lot of my activism is dedicated to trying to find a voice for people with disabilities, chronic illness, and mental health problems, as a result I spend a lot of time speaking of my own experience of ill health, physical and mental. What some may not know is just how rare one these health conditions is, or even what it is. Given that I find myself having to explain it to doctors from time to time, it’s no real surprise that the general population doesn’t know of it. In this post I would like to introduce you to my syrinx, who I’ve named Dave, and my journey through onset of symptoms, diagnosis, and learning to accept him as a part of my life.

For some time I’ve been meaning to write up some things on this, namely explaining it in more depth and also my experience of diagnosis, which I’ve wanted to write for myself more than anyone else. Even years later, I find the memory of it quite frustrating and I’d like to get it down.

I have “idiopathic” syringomyelia, a cyst formed of spinal fluid in the centre of my spinal cord, blocking some of the nerves response my legs and left side of my abdomen..

When I was 18 years of age, in the October, I woke up at around 8am with pins and needles in my left foot. Thinking I just slept funny, and having suffered sensory and mobility problems in my legs in the past, I thought nothing of it and carried on with the day.
As time went on the pain got not only stronger, but began to present in my right foot and leg, and spread further up my left. By the evening a lot of the pins and needles and sharp pains had gone, and instead I was left with numbness, as though my legs had gone to sleep. In the space of a day I had lost all but a very dull sensation when touching my legs.

Having had similar (though nowhere near the same degree) in the past I didn’t think to go to A&E, it had been investigated thoroughly and the result was considered to be within normal parameters. I had not yet been diagnosed with Ehlers-Danlos Syndrome and a year previously had found, my spinal canal was “slightly enlarged”. Any and all neurological symptoms were, as many others with syringomyelia and EDS find themselves being told, ‘psychosomatic’.

I made an appointment to see my GP, a man I’d only recently begun to see. After skimming through my notes he announced that ‘unless you have broken your back, which is highly unlikely as you’re here, it’s probably all in your head’. He prescribed me tramadol and prozac and sent me home.
Upset and frustrated I left and didn’t go back until a few weeks later, when the sensation had deteriorated further and I could no longer stand, even with walking aids. I went to another GP and asked for the chance to see a neurologist; something was deeply wrong.

Months later I got my chance, seeing a well regarded neurologist at the nearby hospital. He told me not to pin my hopes on anything being found after previous investigations had come to nothing. I was told I’d have a full spine MRI as well as a visit to neurophysiology to check and see what signals were going through. Frustrated and far from hopeful of finding answers I went home and waited.

The first to come through was neurophysio. They use that blue tacky substance to stick electrodes to your head, a part of the process I’ve always found quite uncomfortable as they tend to push down quite hard. I’ve quite a fragile scalp and one caused a small laceration under the pressure that was applied. The doctor wired me up and had my lie down, he told me he’d send small shocks into my ankles, let me feel what it would be like on my hands. He told me he’d be able to have a look on screen to see what was ‘going on inside that thing in your head’. The shock to my hand was quite painful, and not having had such a thing tested on my range of feeling in my legs I expected it to be no different. I lied back and waited. 20 minutes later I was roused from the sleep I’d fallen into.

Next up, the MRI. It was the same machine in the hospital that I’d been in before. I’d gone through it all 3 times already so turned up prepared. I had my own blanket and some Winnie the Pooh PJs to change into. (Last time they couldn’t find a blanket and it was so cold my hands and legs were blue by the end of it. Apparently it was quite an odd thing to think of, but as anyone with EDS will tell you, the cold can really, really hurt.) I was slowly guided into the machine after going through the tick box questionnaire, making sure nothing would heat up or rip out of my body were it to go ahead. The same familiar mark, like a line of pencil, was there at the top of the tube, and as with every MRI I’ve had since, I stared at it while the whirs and bangs and zonks droned on around me. Done and over with, I went home.

Two days later, having stayed up late the night before with my now husband, talking about frustrations and expectations, I had a lie in. I was woken at just before 9 by my phone going off. It was the neurology department notifying me of a cancellation the very next morning, asking if it would be possible for me to come in for the results of my MRI. For some reason alarm bells didn’t go off, though I did think it was quite bizarre to have the MRIs ready so quickly, let alone them having been seen by the neurologist. Normally the wait is upwards of 6 weeks before you hear anything. But, it was a chance to get it all out of the way and the frustrations as over with as they could be. Nothing could have prepared me for that appointment.

I wheeled into the office of a grinning neurologist. He was incredibly excitable, speaking so quickly I could hardly keep up with him. He did a quick examination to re-check my reflexes and sensation before I moved back to the wheelie bin  (my nickname for my chair, cue ‘i’m trash’ joke) to hear his verdict. “Very rare”, “very uncommon”,  “quite remarkable” and then came “surgery”. He was beaming at his discovery and I just blanked out.

Surgery. Neurosurgeon. Spinal surgery. It didn’t properly hit until I got home, stuck between my relief and pure fear. Relief at feeling I finally had an answer (incomplete as it turned out to be), and some way to get better, but then was the idea of my flesh being cut open.

Much of the next few months was spent crying and worrying about what was to come, waiting for news from the neurosciences department in the Bristol hospital I would be going to, from the neurosurgeon who would be taking my case. A few months passed before it arrived and I spent the journey to see him distracted. I was going through a kind of high, manic phase and, now, I remember very little of it. I remember being told there were only four cases, if they counted mine, that they’d treated. I remember being told they would ‘fillet’ me, cutting ‘up here by your brain, right down to here by your bum, open you up and have a poke around to see what’s going on’.

Fortunately or unfortunately, depending on how you look at it, I wasn’t and still am not eligible for surgery. As much as anything it’s because I’m too much of an unknown. Other cases he was familiar with, he pointed out, with their ‘published articles’, all had a cause. They had tethering of the filum terminale, Chiari Malformation, cancer, arahnoid webbing. Mine has nothing. It’s just there and they don’t know why. A syrinx with no cause.

Syringomyelia is normally caused by some kind of blockage of the spinal fluid flow. The pressure spiking, or simply having nowhere to go, can cause it to leak into the centre of the spinal cord. A patch of the cord could be the path of least resistance in the face of a blockage, and so in it goes, forming into a syrinx in the usually pin-width central canal.

The images below are taken from some of my MRIs over the years (of which I lost count, I’ve had so many). If you look closely you will see in them a small, unchanging, unmoving circle. In the centre of it is a white dot which gets larger and smaller, and around it is a dark grey area. The white dot, that’s Dave, that’s the syrinx, the cause of some of my symptoms; not all, I should add. It’s complicated by the Ehlers Danlos Syndrome which can also have some neurological symptoms, and the suspicion of occult tethering; where the filum terminale, a little ligament at the base of the spinal cord which shouldn’t but does pull the cord taught for some and is not uncommon in EDS.. The dark grey area around that growing and shrinking circle that is Dave, is my spinal cord. Dave should not be there, that central canal is not supposed to be anywhere near as visible, if at all.

Turning it into a car analogy, Dave is the twat in a transit van who keeps breaking, swerving and switching lanes without looking on the M25, making you 3 hours late for work because he’s left a few crashes in his wake.

These are poor examples at showing his size, though I don’t have the better and more recent MRIs which show him clearer and larger. From it’s point in the centre of the cord, the syrinx puts pressure on all around it. Instead of being squeezed from the outside, it’s from within, stretching the fibres and sending out and receiving the wrong signals from around the body in relation to the area of the cord affected. It’s fucking up the nervous system from the very inside of it. And for me, no one’s certain why.

According to a study from 1966, before MRI, it was estimated that the prevalence of syringomyelia in the population is 8.4 out of every 100,000. Idiopathic syringomyelia makes up less than 1% of cases out of that 8.4.
For me, my syrinx, Dave (and speculatively symptoms from other EDS related complications, according to the doc) had left me an incomplete paraplegic. That is, I have no sensation from the hip down on my left side, and from around level with my breast on my right side. Between the two sides is very mixed, but I usually say it’s ‘waist down’ for ease.

Dave limited my mobility which is incredibly tiring both physically and mentally. In order to move my legs I have to consciously think about what it is I’m doing. Am I having to move my right or my left? How do I make my foot go there, or move like that? The easiest way to move my legs is, aptly, also one of the most taxing. I tense all the muscles during the movement, for some reason it helps focus and then I am less likely to fall. To walk in a way that looks ‘normal’ I think ‘hip, raise knee, lift foot, place foot while moving from hip and knee, hyperextend knee, push weight forward, raise from hip…’ and so on.

You know the line from Kill Bill? “Wiggle your big toe”? That’s been quite an influence in my life because goddamn you would not believe how hard it it. Not just moving toes, but moving them in a particular way. To wiggle one toe, or even all of them, without them just spreading out or curling up and not releasing. I’ve had hours of fun just sat on the bed trying to work out what I have to do to move them how I want.

Anyone who’s ever thought about how nerves work probably knows this isn’t the extent of it. When the spinal cord itself is affected, any number of things could happen. For me, those things include incontinence, feeling like I’m being burned (imagine touching a red hot ember, that pain within the first moments of touching it), aching, stabbing, the feeling of bugs crawling around under the skin that’s so vivid you find yourself looking for them. Electric shocks, tremors, muscles tensing and cramping, feelings of cold or heat. There’s very little that it can’t make you feel. One of the hardest realisations I’ve had to get to grips with is that this may not be the worst of it.

Syringomyelia, as mentioned above, often has a cause. Treating the cause is what usually brings about an improvement (if any) with the size of a syrinx. It’s not something they can go into and just suck out, its right in the centre of the cord. There are options such as putting in a shunt to prevent pressure from rising in the cerebral spinal fluif, but even that does not have great success rates. What is considered ‘success’ with a shunt varies widely, too. For a lot of people who have had shunts installed and their syrinx reduced in size as a result, many have suffered a change in symptoms that they wouldn’t exactly describe as an improvement. Increased pain is among the top problems which I see a startling number of people among syringomyelia/CM noting, yet they are considered a success because the syrinx itself has reduced.

Dave, my syrinx, he is presently (and has been for a number of years now) around 30cm long and 4.6-4.7mm wide at his widest point. One thing that doctors do not like pointing out, and so have skirted it almost every time I’ve asked – almost – is what the future is likely to hold. The reality is that it’s not necessarily going to be bright. Because of the nature of an idiopathic syrinx, it being so hard to treat and the reality of ‘success’ rates, it really is an unknown. In American literature it’s largely considered to be a progressive problem, wherein the syrinx grows in length or width, or in some cases another syrinx appears somewhere else along the cord (in some of my MRIs you can see an enlargement in the canal in my c-spine about 3cm long), and mobility and sensation are further decreased as a result.

For me it’s a balance of what I’m able to do now and my quality of life, vs the risks of a shunt and the potential for success. This decision is out of my hands at present, though given the balance as it is right now I wouldn’t consider surgery an option anyway, particularly after the surgeon’s ideas of an expedition of sorts. It’s always going to be difficult, and the future will most likely be more so.

What I cling to with dear life is the comfort that I am human. While I do suffer from quite severe depressive phases which may give me incredibly negative thoughts about it, I often find comfort in knowing that we are very adaptive creatures, we are creatures who find ways around things.

I have learned to walk again. I can wiggle my big toe if I try really hard. Despite the problems I developed with the EDS I can just about hold a pen, or a cup of tea. These are things that, thinking back to the times where I tried so hard to relearn or adapt and they seemed impossible, I managed.

I’ve often found myself asking the question ‘why did this happen?’, but the answer is as simple as the question, and given what I write above, is also quite a positive thing if looked at in the right light. It’s because I’m human. Bodies are incredible things; they can perform incredible feats and possess remarkable strength. They can also be so incredibly fragile and have the power to mess you up quite royally.

Initially written for Rare Disease Day (28/02/2014) revise 13/02/2016

No, I will not laugh at people lying drunk in the street.

There is a summary at the end of this post for anyone who struggles with the full text.

I appear to be one of few people this year who isn’t relishing in laughing at and mocking people who have got intoxicated to the point they’re collapsing in the street, with little thought to the circumstances that may have led to them getting into that situation in the first place.

There is one in particular that has popularised this trend of mocking circumstances people find themselves in. The photograph pictured, by Joel Goodman, been described as a ‘perfect’ scene; with ideal lighting, vivid colours, well framed and with an extraordinary look of one of Britain’s streets being policed on New Year’s Eve has been shared hundreds and thousands if not millions of times in the first few days of 2016. It’s a chaotic scene that shows a man lying on the ground in the street in the background. There is a man held down on the floor by two police officers at the forefront while a woman, dressed up for a night out leans over, seemingly trying to say something to him or them. A crowd stand around watching in the background.

What’s happening in this photo? The way it’s being shared is completely devoid of context but the assumption is that they’re knock-down drunk. That they gave overindulged, been drinking heavily on New Year’s Eve and have lost control of themselves to some degree. While the background has now been explained to some degree by the Manchester Evening News, it wasn’t known at the time it went viral. Most of those sharing and laughing at it will not be looking to find out the context and simply have no idea. At a glance, without that context, we don’t know if they’re drunk or if the two men have been fighting or one has attacked the other, we don’t know if the man lying down is injured and someone’s given him a pint while he waits for an ambulance (odd as this is, I’ve seen it happen more than once), if drugs are involved or if either of the men struggle with alcoholism.

Sharing photographs of people who have fallen down in the street is beyond crass, cruel, and I honestly would have expected a lot better from people I know. Particularly of feminists who take an interesectional approach to social issues. Many of us have been in that situation, some of us through no fault of our own having been drugged or plied with more alcohol than we intended on drinking. One of the most common forms of ‘spiking’ a drink is people buying doubles instead of singles or topping up drinks so that someone loses track of their alcohol consumption. The coersion of ‘just one more’ when inhibitions are already down.

Men who are a part of ‘lad’ culture regularly boast of getting women drunk so as to get them into bed. Having spent some time staying at a pub while homeless (the landlady was very kind and offered me a place to sleep for a while) I have witnessed men doing all they can do get women intoxicated. I have tried to intervene for some, informed women they’re being given doubles, triples, and informing them when their drinks are topped up behind their back. Do you know what these things lead to? Being drop-down drunk.

Don’t think for a moment that the images which can end up circulated of intoxicated revellers are all perfectly innoccent because ‘in all likeliness..’, I know somebody locally who was the subject of such a photograph, taken of her on a bus after having had her drink spiked (the police were involved although I’ve no idea if it was drugs or alcohol). I don’t believe the photograph went beyond local circles but to say that it affected her would be an understatement. Last time I spoke to her, admittedly a few years ago now, she was still finding that people recognised her as ‘that lass who passed out on the bus’. People still laugh at her for being in a situation of vulnerability that was forced upon her while she was trying to have a nice Saturday night out with friends.

And this is the point, it’s a situation of extreme vulnerability some people are going through. Even if that vulnerability is self inflicted it could well be that they don’t have all that much control over it due to alcoholism or peer pressure/coersion (which anyone aware of social issues knows can be a very, very powerful thing). Many are at a point where they are largely helpless, not in full control of their actions or understanding what is going on around them. In this case, whatever has happened to the two people involved in the photograph, they have woken up to find themselves the subject of unending ridicule. This is something they cannot outrun because of one night where they clearly made some bad decisions. Global shaming, particularly for the man who could potentially be injured for he’s been photoshopped into so many images for laughs that it’s becoming a meme in itself.

How would you feel if it was you, through whatever circumstance listed above? How would you feel if it was a friend of yours and you knew the context to be a bad one?

Much like the premise of my last essay on here regarding consumerism and considering context, when it comes to pictures of people lying in the street, these are things that anyone who considers themselves to hold an intersectional approach to social issues should stop and think of. Equally anyone in health who has experience with alcoholics, people who have been drugged on a night out, or those who have been plied with more alcohol than they knew of should, as a consultant I know put it, know better.

Show some kindness. If you don’t know how those in the photo feel about it, don’t share it. Misfortunes around substance use and abuse are not a laughing matter.

Summary: I don’t believe it’s right to take photographs of people in vulnerable situations without their consent, let alone when they’re not fully in control of their faculties. There could be a lot of reasons a person has ended up in that situation; alcoholism, spiked drinks, trauma. When you laugh and share these photos, you are potentially mocking (usually working class) people in tragic situations. Even those deliberately getting themselves into that state, you’re laughing at vulnerability of them while they’re unaware their misfortune is being ridiculed online. When going viral, a person may be unable to escape it. Give it some thought.

Edit: Anita Sharma on Twitter has sent me this link to a pdf by the All-Party Parliamentary University Group which I recommend reading if you’d like to explore this side of abuse within lad culture. Some of the issues mentioned in this post which centre around that culture and behaviours towards [mostly] women which are prevalent in social situations involving alcohol are looked at in more depth and offers a wider context of the issues involved.

Not so ethical: The exclusionary nature of ‘moral’ consumerism.

A. k. a. Why you can shove your ethical consumerism up your left nostril sideways.

There is a summary at the end of this post for anyone who struggles with the full text.

For a while now I’ve wanted to write on ethics in consumerism and in particular how those ethics are out of reach to those on lower incomes or in a number of different circumstances. How boycotts are not always practical and how, if you look at ethical consumerism with an intersectional approach you find financial or other forms of privilege are at the heart of it as a movement which is increasingly exclusionary the further down the lines of economic inequality you go.

I’ve tried to write on this before in an essay of a similar title, ‘Not So Ethical‘ but I never felt I really managed to get across the problems that I had with people who tout this and judge others for not doing so. There’s little understanding to the financial and practical barriers it can present to a good number of people.

For example an unemployed single mother is unlikely to be able to afford the inflated prices at her local stores. Butchers and greengrocers are incredibly expensive compared to the cheap meats available at the likes of Tesco and Sainsbury. In rural areas even places marketed as ‘local’ and good for the community, like the Co-op, inflate their prices knowing they have a stranglehold on the surrounding community as there’s no larger, cheaper stores nearby; People will be forced to pay. When the cost of local produce eclipses that of a cheaper shop that can be done 20 miles away, travel or home delivery included, it’s a no brainer which you go for if you’re stuck in a financial rut with little income and a lot of outgoings and responsibilities.

A person who struggles with their sight or literacy and it prevents them from being able to read ingredients printed on packaging is not likely to be aware that the product they’re buying contains palm oil, a product for which a large amount of animal habitat is destroyed leading to the mass deaths of certain species.
They may be disabled in a way which prevents them from being able to cook, leaving them reliant on ready meals and other pre-made foods. If you are disabled you are more likely to be in poverty which means those pre-made meals are less likely to be high in quality and therefore will almost certainly contain palm oil. Frozen ready meals in particular are renown for their palm oil content, but in those situations how many choices do you actually have?

At christmas, a disabled person scraping by wants to buy nice presents for their family but has been in overdraft for 4 months after unexpected bills threw them into financial chaos. Do they risk something from a nice local shop, or one with a good reputation, likely to have a price tag which goes along to match the moral way in which they practice business? Wander around countless shops and physically exhaust themselves trying to find gifts from different retailers that they might be able to afford? Or do they avoid the higher risk of potential financial meltdown if another bill comes in and hit up amazon for cheap but nice products where they won’t feel guilty or anxious about where it leaves them?

Someone working 3 jobs and trying to raise kids will likely not have time to research the manufacturing process of a company’s stock; where the cotton is produced, whether those workers are compensated and living in reasonable conditions or are being exploited. Where the cotton is turned into cloth, the same thing… Are the staff free to do as they please? Can they eat? Are they healthy? What of where they’re stitched together into the products we buy… How are they treated there, and how does it compare to the material suppliers given this part of manufacture is what often dictates the view of the company’s ethical standing? What I mean by that is, you can have a company abusing workers right the way up the chain until a point where people pay attention. Treat those right in areas where people are looking and ultimately you can hide a lot of sins. Is that person in 3 jobs going to put in the effort to dig past that level of every retailer they use?

Someone who struggles with food and nutrition may avoid a vegan or vegetarian diet because they do not have the time or capacity to learn to make changes to their diet or it’s not conducive to their health. If they’re unable to cook and beholden to what’s available in store, the pre-made foods generally being on the pricier side of things, they need to find the time to learn which might not be possible in their circumstances. They may have a learning disability that makes it an awful lot harder for them to learn, they could be illiterate and struggle with recipes so don’t know a starting point. They also may not have the money that it takes to learn to cook; buying ingredients they’re unfamiliar with and wasting valuable food as they learn their way around a kitchen and figure out what tastes they like, and all of the energy use that can entail.

People who can just about afford their food shop and have to search around on pricing is very unlikely to buy organic free range eggs and meat, or organic local vegetables, lamb reared in Wales. They’re looking for a meal they can afford; cheap meat, some vegetables, ready meals. Quick cheap food they can sustain themselves on without it leaving them in a tough spot with cost, health, and time; both cooking wise and education on nutrition for a potential change of diet.

Something galling of those touting their moral fortitude in their condemnation of the actions of others is an ever-present hypocrisy. Twitter is full of people acting holier than thou, telling others they’re ruining the planet and just need to make this change, or that. Mentioning certain companies can be seen as an invitation to be reminded of how awful they are (the implication heavily being ‘you should be boycotting them, what are you doing?).

It’s all well and good being critical of companies if that’s your thing, but you should at least have firm standing from which to preach if you consider yourself high enough morally to lecture individuals on their consumer choices, and you better damn sure know the angle you’re approaching it from given the economic barriers placed in people’s way. For example, are you using Apple products? Do you own an iphone or ipad? Apple have been consistently criticised for the pollution the manufacture of their products causes as well as working conditions in their production facilities and health of their staff.

It’s not just them, either. Other smartphone, tablet, telly, laptop, and PC manufacturers have had similar condemnations. There is no ethical option in that regard, tech is not an ethical business and in using technology you contribute to the harm it’s doing to the planet, to communities, contributing to the exploitation of labour (including of children), ill health of workers in certain manufacturing areas, as well as supporting the poisoning of water sources and land from waste.
A lot of technology is mass produced in planet-unfriendly circumstances by people who are being exploited, and if they’re not being exploited just go further down the line. Look at the conditions workers are living and working in around the mines where the raw materials used in the production of tech are taken from.

If you use technology you are as compliant as anyone else. I’ve heard it said that technology is something that cannot be avoided as the internet is a daily part of life, and that’s true. But if you consider yourself as having a pass for a situation you are effectively forced into, how does that make you different from anyone else forced into a consumer choice against their ethics?
I am not ethical, I am likely to never be ethical, not for lack of want but circumstance. Judging people for not following the kind of ethical decisions they’re expected to make as consumers is not feminist, it’s not kind on disability, on poverty, on people’s capacity and opportunity to learn things, people’s struggle for time, on all manner of things.

The hypocritical call for ethics can be very harsh indeed when so many people feel guilt over the decisions they make as consumers based on the circumstances they’re in. I know many who want to boycott companies, buy better food, buy local, shop around. They can’t.

So eat your organic, local, vegan food, buy your fairtrade t-shirts, drink your independent teas and boycott amazon and Tesco, but don’t condemn others for not doing so. Unless you know a person’s situation intimately and how it relates to any of the choices you make, you’ve no idea what their reasoning is and how much choice they truly have

Intersectionality is a tool for understanding these things, to see how different personal circumstances apply on different subjects and social issues.
Use it.

Summary: While I believe it’s commendable to base your consumer choices on your personal morality, you cannot expect the same of everyone and it is deeply unfair to do so. It takes time to research and learn, as well as the faculties to do so which some with disabilities or literacy issues lack. It can also be very expensive given that ‘ethical’ products are often priced higher than others, which makes it difficult for someone on a low income such as benefits to afford. It’s also very difficult to know which companies are ethical and which are not, given that large companies often hide their practices from consumers. I ask that you consider the potential circumstances of others instead of judging them based on your world view.

Edit: I’ve thrown in a little bit more information about the ways that a vegan or vegetarian diet can be difficult for some and given some examples. I was told I was being dishonest, making going vegan sound harder than it is, and they weren’t able to see how complex that can be, as a result I’ve expanded on it a bit. I have also changed the title to be less confrontational, though frankly the point stands. It’s unfair to push this onto people.

Art is hard; A crisis of artistry, identity, and disability.

[content note; mention of self harm]

There is a summary at the end of this post for anyone who struggles with the full text.

I’ve been talking a lot about my mental health lately, a part of finally trying to put together all the pieces and understand myself; who I am, and perhaps even a little bit of how I work. Right now I’m at a point where things are not positive, I’m in a hell of a low and yet
somehow, in this darkness, a spark of creativity has turned up.

I was suddenly itching to do something, fidgety, almost vibrating. I wanted to create something, to paint. This is something which is intrinsically linked to higher moods rather than lows like this and I had no idea what to expect, I still don’t. Usually when creativity rears it’s head and I feel compelled to find an outlet I’m in a place where I’m almost high. I’m happy, confident, and proud. I can’t be dragged away from what I’m doing and while I’m self-destructive and coming apart at the seems,experience of making something ultimately leads to an immense feeling of relief and satisfaction, even of affirmation.

23103330665_7d005bd0b3_kStereotype as it may be, my art, and creativity more generally, are very heavily linked to my mental health, particularly mental ill health.

Spouse and I just had a big chat about art as being a part of my identity, a part of who I am from it’s presence in my formative years, my always doing it, and it’s sort of helped me to wrap my head around why it’s such a frustration now when it used to be such a happy passion. It seems like this new development for some people I’ve got to know, a kind of ‘ooh I didn’t know you could paint’, but I’ve always had ‘artist’ as a big part of me in so many ways even if at times it felt fraudulent for my lack of creating.

I would always have a sketch pad around when I was younger. I’d be chatting away on IRC or reading and drawing at the same time. It was just always there, every day.  Art supplies of all kinds littering the office our computers were in. Over time this familiar artistry started to go, and not because I wanted it to but rather my body just didn’t want it to happen. I kept having to take longer and longer breaks, spend more time on individual pieces.

As puberty kicked in my Ehlers Danlos began to really make itself known. To hold I pencil I started having to tape my fingers and
wrists to try and hold off the dislocations and restrict movement. Sketching turned into painting as it was easier on the joints in my fingers, I kept going with projects here or there instead of having it as a constant. I started putting breaks between works, putting away the sketch pads and adjusting to a life without it. While the tape reduced the dislocations and strain on my fingers it’s not a perfect solution, and the strain still took it’s toll. Over time I continued to do less and less, brushing it aside where possible to save myself the pain and dexterity loss, and it’s reached a point where it’s become a rarity.

Art helped to keep me toge22673896828_3b2f33ceb5_kther as it was a distraction from everything, all the time. Now I’m at a point where, while all my creativity comes out in massive bursts, it doesn’t offer that same escape from my pain and problems because it’s a bringer of them.

Every time I do a project I want it finished, I want it perfect. I disappear into it like I’m completely detached from the world and it absorbs my full focus, often accompanied by a severely negative or destructive set of behaviours and lines of thought. It’s something that it’s hard to drag myself away from and if I do I feel a deep sense of loss, like I’m incomplete.

As things are now, I seem to just be turning the corner after a week of having meltdowns. My desperation to paint has consumed me and it’s taken over everything, bringing with it explosive irritation and anger, immense frustration at seeing my limits so plainly pointed out and a sense of loss along with it, very little sleep, my desire to self harm has gone up enormously, I’m quite literally tearing my hair out at times.

I’ve not finished the painting that I started, a large project I’ve been wanting to do for the best part of 2 years, the urge to get on with it surfacing intermittently in that time. My hands are taped up heavily in micropore and my wrist is in a brace, I can barely move my fingers for bruising and any strain or movement brings grinding clicks and a feeling of movement or something being out of place deep under the skin of my hands. Under a haze of oramorph, I still have that same drive to make something pulsing away. I want to finish and I’m deeply upset and disappointed in myself that my body has failed me so close to it’s completion.

With losing this ability, having a constant creative outlet turned into a bizarre, frustrating, and painful performance of human fragility, it’s like I’ve lost a big part of who I am. Something that was part of the very fabric of my life and helped me escape so much has been stolen away piece by piece.22470032224_580c6a3145_k

The more that I create, use my hands to excess in ways requiring strain or dexterity, the less I’m able to in future. Each time I try to do something like this it’s stretching me beyond the limits of what my body can cope with and, while my brain is pushing me not to stop until it’s finished, in doing there is a significant pay off. Over time it amounts to expedited though inevitable damage and a greater chance of additional mobility and pain problems post-recovery (usually 3-4 months).

What frustrates me further is that, having this change over time from a tool of calming escapism to an almost traumatising experience at times, finding the pain and harm I’m causing myself by pursing it, I fear I’m going to begin hating this part of me. I already find myself feeling negatively of any desire to be creative, trying to force it aside when it arises, and I have worries that this very part of my identity is going to become something I both desperately want and deeply resent for no longer having access to it.

I’m losing my artistry and along with it a part of my identity, and it’s dawned on me how much of it has slipped away over the past 4-5 years. I have this massive part of me that I’ve been trying so hard to ignore for self preservation, this great love in my life, and to pursue it is going to cause irreparable harm both physically and mentally.

22815114649_0067b31b8f_k

Art is hard.

Summary: I have always considered being an artist to be a large part of my identity, but in recent years the decline in my physical health and difficulties with mental health mean I have been unable to paint. It’s difficult to let go of such an intrinsic part of who I am.

I am not here to inspire you.

There is a summary at the end of this post for anyone who struggles with the full text.

In the past few days, as a result of publishing a long piece on my physical and mental health, I’ve had a few offers to write for a few different places. Start-up magazines, blogs, nothing major. Most of them have phrased their offers around the idea that I’m an inspiration, how I’m managing with my health and being so open about it, going about my daily life with that as a factor, and somehow that will inspire people. Inspire them to do what, you ask? How does my terrible physical state in anyway inspire you to do something?

Oh yes, it doesn’t, because it’s not really about being ‘inspired’ at all, is it? It’s about sharing a story of adversity and triumph, about people looking at my life, laid bare in  print, and going “wow, at least my life isn’t that hard”. It’s about managing to adapt to daily life and do normal everyday things that normal people do. It’s a message of “wow, if they can get on with things then what’s my excuse?” or at times even just a chance to read a sad or feel-good story of how a person has overcome their disability and learned o cope. Hooray! Happy endings!

They want a sanitised version of how life is, a vague notion of illness which doesn’t really have much of a description. They don’t want the symptoms; the incontinence pads and catheters, they don’t want staying in bed because everything feels so horrible and wrong, or being unable to get dressed without help, fall and injuries. They want a vague idea of some nightmarish scenario that somehow you consolidate with your life and you come out stronger. They want bravery from you, a sense of not giving up no matter how hard it gets.

While for some that can happen, it’s certainly not true for a lot of people with disabilities, illnesses, chronic pain, mental health problems and so on. My life is an ongoing battle with symptoms that pop up, criss cross, affect one another, and it becomes a huge mess of not-coping. I’m not getting a happy ending and I’m not triumphing over my life’s pitfalls, I’m living through them, I’m learning to adapt to them because I have no choice. There are some things where I haven’t learned to adapt at all and have no intention of doing so because I know the difficulties that will be involved. I’ve lost my entire future to disability and no attempt at getting it back will work. Am I less brave for not trying now? Less inspiring?

Asking a person kindly and respectfully to write a piece talking about how life is for them and how it will all play out in future is one thing, but a lot of these offers don’t come in that way. They’re abrupt and to the point. “We want your story, you could inspire a lot of people.” They pay little mind to the fact that the story in question is a life. They’re asking to take a piece of you, lay it bare online for all to gawp at. Your words, your life, you struggles, so that people can read and marvel at your world, be amazed at how you manage to do all these everyday things like a normal person does.  It’s disgustingly exploitative. It’s unbelievable how many people offering these writing opportunities will outright refuse to pay for your time and effort. There’s the idea that the offer of a platform, however big or small, is compensation enough. “It gets it exposure, so many will read it!”, “you get to spread awareness” It’s as though they’re doing you a solid by putting it up, rather than you doing them one by giving your Labour and a part of your life to them.

the-only-disability-in-life-is-a-bad-attitude-1It goes down the same kind of line as ‘the only disability in life is a bad attitude’. You become a shining example of the Good Disabled  who gets on with daily life and wo
w, even though it’s all so shit and depressing and clearly very awful you can still smile and laugh! Who knew?! The default consideration of disability is that the person who lives with it must be in abject misery, there’s no nuance in the overall message, that you can have a big and complex life with ups and downs, just like everyone else, or even of the vast differences in the wide spectrum of disability. All that’s really wanted is, once again, ‘at least I don’t have to live like that, I can’t complain”

This gets particularly insulting of late given things what disabled people are facing in the UK. The lives found so inspiring, the lives that readers use as a yardstick to measure how good they should feel about their own lives, are being turned upside down and inside out by austerity. We’ve been facing cuts across the board, from our housing, our Motability cars, we’ve seen cuts to our benefits, increasing use of food banks, energy poverty meaning you’re having to keep the heating off at the detriment of health,  and more and more sanctions. There’s the bedroom tax, the struggling mental health services so badly underfunded that even if you need help dealing with it all, you could find yourself refused or waiting a long time. Of the demographics that are most impacted by the cuts to social security, health, and social care, disabled people find themselves ranking top, taking the brunt of the hardship.

I’ve seen immense hardship among my circle of elective family and friends. I’ve seen a lot of pain, terror, and panic attacks at rumours of more and more cuts being announced or leaked. The dread of the brown envelope coming through the door and the understanding that you probably won’t get the help you need. Even if you’re too ill to leave the house, you’re expected to move into work anyway, leaving you with nothing and no hope of gainful employment. You have the constant despair of knowing that the inevitable brown envelope could ruin your life, spell homelessness, starvation, and poverty.

As well as completely papering over the hardships to keep this vague, homogeneous and inspirational idea of disability alive, it also ignores what can be considered huge triumphs. Getting out of bed is a mammoth task at times, it can deserve a round of applause. Taking a shower? Get out the party poppers! They’re things that you can be proud of, achievements people don’t expect or understand, but achievements nonetheless. They’re achievements no one wants to hear about. Reading someone going on about their daily life and struggling but overcoming each little challenge presented just isn’t inspiring enough. Making a meal or going shopping just doesn’t give the same sense of personal gratification as someone who, say, has a job, children, or gets an education in spite of it all (I use ‘in spite’ here as it’s precisely how it’s put forward, a triumph over disability rather than it being a part of you).

If you ever feel like offering someone a platform to speak about something person on your website, or an ‘opportunity’ to write an essay for you, seriously consider what it is you’re saying to not only that person, but to those who read it. I’ve seen an astounding lack of consideration in this area for years and it’s infuriating, I’m not tolerating it anymore.

I’m not your inspiration.

Summary: Disabled people have a tough time of it because of stigma and the way we are portrayed in media. It’s regularly turned into ‘if they can do it, what’s your excuse?’. It turns disabled people into a motivational tool instead of being seen as people, it’s dehumanising us by taking away the nuance of our situations. It doesn’t actually inspire anyone to do anything though, it is just used as a way to make people without disabilities feel better about their lives; ‘hell yeah, I don’t have a disability’, in essence. We are also used as a resource for information and stories to make people feel their life isn’t so bad after all, and are often expected to provide this for free because of the awareness it raises around disability issues.

 

Mapping the intangible

Content note: Very detailed talk of suicide and self harm, rape, disordered eating

I’m sat on my sofa, exhausted and in a lot of pain after a night of restless sleeplessness, trying to get in the frame of mind to allow me to explain how my head works. Not my actual head, of course, but rather the jumbled basket of emotions, thoughts, moods,  and reactions that I have day on day, year on year. The things that make up who I am, or perhaps that mask who I am. They’re ever changing and splinter off in different ways, making odd connections where you wouldn’t think one could arise, or seem inexplicable but are linked nevertheless.

For a long time now I’ve been wanting to try and get some record of or try to find a way to explain how my moods, thoughts, and emotions have impacted me, perhaps take stock of the turbulence and upheaval that have an enormous presence in my life. If I can get it out of my head and into something that doesn’t completely escape description, even if it’s just a fraction of it, it can surely only help. The more I learn about myself and how to express precise moods, emotions, trains of thought, the less I seem able to do so. A quest for a precise description of self-analysis has led to over-analysis, and employing techniques of mindfulness in recent years have only escalated this. Recently I’ve gone back to seeing someone who’s helped me a lot in the past and I’ve been asked to try and think about or maybe write about what’s going on with me. I know something is wrong but I don’t even know where to begin in expressing it, the sheer scope of it baffles me. Where do I even begin?

I’ve had mental health problems dating back to my childhood, low moods, high moods, anxiety, irrational anger, impulsiveness, obsessive and disturbing thoughts that don’t feel like my own.  I don’t really know what qualifies as who I am any more and I’m not sure that I ever have or will. How do you find the line between personality developed from lived experiences and moods, emotions, entire ways of thinking that are constantly destructive, intrusive, or otherwise harmful, colouring almost every period of your life in different ways? Is there a line between them or is it something I have to accept as being part and parcel of my personality? No matter what it’s becoming eminently clear that the two are always going to be intrinsically linked. While a line may one day make itself clear, my experiences have been impacted by the moods I had at the time, my responses to situations have been clouded by them, my reason differs with each leading to an outcome that may otherwise not have been. It’s woven into the minuscule bits of context that have made up who I am.

I often wonder what I’d be like without it. If you took away the constant whizzing, clouded, grey, itchy, or loud thoughts that circle my head. If you stole away the feelings of greatness, elation, and joy in times of great pain and sorrow, or unworthiness, shame, and wanting to die when life around me was actually better than it had ever been, how different would I be? Would those experiences have led me to be a different or better person? I’ve always had a passion for learning but struggled with it desperately, always unable to focus or absorb information under what felt like immense pressure and inevitable failure. Would I have been able to cope in structured education? Could I have managed with my physical problems better and made something of my life instead of just desperately trying to keep myself from drowning?

Around this time last year I had come off the antidepressants that had been prescribed a few years earlier, finding that while they were successfully dampening the highs and lows I formerly had, making the transitions between them slower, it seemed as though everything had been slanted towards the lows. For the previous few years I had barely done much at all, my thoughts were still switching between a chaotic and distressing buzz and sluggish enveloping cloud. It was as though I was stuck in a loop of frantic self-loathing, an almost calm sombreness, and acceptance of eternal worthlessness, all the while battling to be better. Something about the feelings made them harder to remember, hazy, I couldn’t think back and place how I felt or associate things with moods and any swings that I had. When I try to think back it’s just this grey fog and a vague understanding of what lies beneath it.

I was sick of feeling stunted and began romanticising what it was all like in the past. My moods and the thoughts and emotions they influenced were so incredibly vivid, in my mind they’re like bright or dark colours, solid or beautifully mingled images that are easy to picture and associate with seasons, music, art, activities, colours, memories of feelings and even smells. In my head I cherry picked the times I had channelled the pain into writing or began to see lows as this struggle that bettered me in the end, after all I got through it didn’t I? It’s better than not feeling things so clearly, surely? Also the times that my elation, this almost palatable high and focus channelled so beautifully into art. Days upon days of not sleeping, just focused on getting everything perfect, hour after hour of creation and achievement. I couldn’t go wrong and oh God the happiness that came with it, what was almost a brightness, a light. Yellows and oranges and sunlight, warmth, freedom. I convinced myself I was holding myself back, like my feelings were being trodden down and told to shut up and what it left just made it seem like everything I was going through wasn’t worth it, not least with the addition of the sexual dysfunction that accompanies most antidepressants, I just wanted to feel something again. I wanted Me back. Or should I say the Me that nostalgia had invented after a few years had allowed me to forget it didn’t exist.

I refused to acknowledge the constant battle against the allure of a razors edge or seeking solace in the bottom of a bottle. I forgot how the elation gave way to anger as the need for perfection leaned towards frustration, taking every interruption or expectation to participate in the world outside of my own little world as a hindrance to the important thing I was presently a part of. The desire to escape and explore everything, to want an altered state of mind and new experiences and a different life. I wanted to create, and feel, and suffer, and live. I wanted the purpose I was sure I once had.

Despite all of the hopes I had built up for myself, I coasted throughout last winter. Energy and emotion I wished for turned into a void instead. My thoughts were sluggish, thinking coherently was difficult as each time I was having a conversation or thought of something it’s like it stopped halfway through, like a caught fish wriggling free. It took effort, concentrating on anything became a mammoth feat. I began to hate myself again, manifesting in everything from shame over the smallest things, feeling as though every minor misstep was a failure. Patterns of negative thoughts were a constant, taking any small event and picking it apart until a conclusion was found that I was worthless. The desire to self harm was there but aside from a few particularly bad days it was more of a macabre dalliance with the thought of it rather than the act itself. There was no biting need to vent or find some kind of relief because no pressure ever built enough, it was dull, blunt, a heavy weight rather than grief and chaos.

A big part of this period was hating the body and looks I had spent so much time and effort into learning to love. Love is probably too strong a word though I had always hoped to reach that point, I’d got to more of a passive acceptance. The weight I was so pleased with putting on after years of trying began to drop off during a period of sickness and I found myself focusing on it, obsessing over it, and starting to fall into old habits of wanting to restrict my intake of food, to get smaller, thinner. The acceptance I’d achieved dissipated as it presented itself as an avenue to try and regain some control. Under the guise of trying to be more healthy, to better love myself as I kept telling myself, I began to explore different foods, reading the labels of everything I ate, using more fresh and basic ingredients trying to cut down on processed food, eat more of certain groups and cut out others. I began to feel guilty if I slipped and to make up for it I would restrict myself further. I continued shrinking and struggled to balance the desire for self acceptance and my new take on old obsessions. I’m still trying to fight the urge to measure and restrict, but the control it gives when I feel I get it right is an odd comfort when everything else feels so uncertain and beyond me.

A lot of the lows changed come March when out of nowhere I suddenly started making plans. I woke up one day and wanted to sew. Then I wanted to move the furniture around, spring clean the house. I wanted to overhaul the garden and grow vegetables and giant sunflowers again. I had ideas for art projects, paintings. I wanted to go and see friends, do things, redecorate, cut my hair. I was a force to be reckoned with and everything felt so right. I remember thinking everything was calm and orderly. I spent less time online, I started sewing projects and creating recipes, I kept a diary. It seemed like nothing could go wrong. It felt almost as if everything bad was behind me, that the future would be brighter now, that things are in order and I’m healthier and it was all going to be okay after all. The yellows and oranges and warmth were here to stay.

Though I had a crushing dread in the back of my mind as I went about things, nagging at me that I’m setting myself up for a fall, I did all I could to ignore it. It must have been there because every time someone suggested that the future would be brighter a niggling doubt arose, but I didn’t want to confront it in nay meaningful way. I tried to play off the explosive anger as justified, the constant irritability and forgetfulness or flippancy as nothing. I was frustrated by the pain that was holding me back but I felt I had so much going on that it didn’t really matter because in the grand scheme of everything I knew life would now be it wasn’t such a big thing, was it? And life was so huge, so vast with so much opportunity, so many connections to be made, ideas to have, things to do. The irritability only grew as a result of my physical limitations and wasn’t helped by the excessive quantities I drank, in part to make the pain shut up and in part because it was just there, but the connection wasn’t made until much later. I had convinced myself it wasn’t the voice of experience and reason trying to get me to stop and think but instead an attempt at self-sabotage over the Now Okay life I was sure to have. To others it was obvious I was a mess, scattered and temperamental, I had spread myself far too thin and was completely unaware. Eventually it was bound to come crashing down.

I want to point out here that what I have written so far draws on memories. Looking back and trying to pick apart the moods, the thoughts, all of it I guess. There’s probably some bias in it due to the mood that I’m currently in, it peppers everything else so I can only imagine it would also impact on my memories and ways I’m expressing things. Writing of the low I am in at the moment will contain a lot more detail, I’ll also be speaking candidly about self injury and suicide ideation.

I can’t remember the exact point it all fell apart but it was perhaps 2 months ago, and with a violent ferocity. There was a few particular days I vividly remember during the swing, hazy ones where I didn’t feel here. It was as though I had taken a step backwards, out of my body, by about an inch, and while I could think it was difficult to really get words out or even connect with what was going on around me. I couldn’t take in what people were saying properly and forgot what I was doing a lot, getting easily confused. I was very calm but completely detached. I’ve had it to lesser degrees a lot as far back as I can remember, usually happening round the more extreme parts of my mood. On the outside I’m told I looked dazed, glassy eyed and not full there, difficult to engage with. Then what started as a thread of a few negative thoughts and odd thoughts of self harm one day turned into a full scale unravelling the next. A close family death and news that my husband had to undergo testing for cancer added to the weight. I couldn’t even take stock of all the ways that life was wrong. It all suddenly all dawned on me, everything, and I had no idea what to do. I couldn’t do anything, I can’t do anything, it’s was all out of my control.

I began restricting my meals further as some kind of way of regaining a balance but each time I deem myself to fail it just adds to the weight. A spiral of shame begins and even if I try to be mindful I just end up over-analysing and finding a hundred other things that are pretty terrible or set up ready to make life worse. Thoughts have been buzzing and chaotic, not really following particular stream of consciousness but changing all the time. One thing, then another, and it leads to another but nope here’s another and oh look have more. They itch, I want to tear them out of my head as they form an almost cacophony of noise inside my skull. It’s like every time I grasp at one another come along and bumps it out of the way before I’ve had a chance to look at it. Someone I spoke to recently likened it to them being put through a washing machine.

This time the low has brought something new. Voices in my head. I’ve had them before in so many ways, particularly as a teenager but not quite in this way. These they circle around like little whispers sometimes, they feel like they belong to someone who isn’t me but I can’t quite place why they feel that way. They don’t seem to feature often but kind of pop up every now and then without cause to tell me I’m worthless and ask who would possibly love me. They bring with them emotions; shame, despair, embarrassment, worthlessness, a feeling of being undeserving of love and a burden. The emotions are usually there to some degree anyway but it heightens or changes the nature of them.

The compulsion to injure myself has been a big part of this low so far. It had been around 2 years since this was last a feature and I left three deep gaping sliced in the side of my torso with a razor blade. I don’t know why I get so transfixed on the desire to cut but it’s difficult to stop thinking about. I’ve tried to stop it by giving myself other outlets. Drawing on my arms, punching myself and pinching until I bruise or bleed, digging nails into my arm instead of picking up the razor blades. It didn’t work. The scars I left 2 years ago are to be accompanied by more as these new gashes heal, and while I hope to fight it I’m still finding it hard not to obsess of the idea of doing it again. I found the cutting like opening a pressure release valve, in a similar way to how crying hysterically about something can make you feel a relief from your sadness. It has a calming effect that makes it a tiny bit easier to cope, even if doing it in itself is a sure sign of not coping. It’s not something I find myself doing on a whim, I obsess over it to the point that it’s too much, instead of just grabbing a blade and going at it, I ready a bowl of disinfectant, gloves, a fresh blade, paper towels for the mess. Steropads and surgical tape for dressing. It’s not until afterwards that the gravity of what I’ve done sinks in. Shame, regret, loathing.

Some emotions themselves bring up memories, things I’ve done or had done to me and want to forget, they get worse… Heavy, crushing. I can’t help but feel I’m a failure and even though I’m here, understanding this is not necessarily the ‘true me’, who I am, I continue to feel that way. This is one of the few places I can definitively draw a line, I can see it’s all illogical and have this notion that my awareness of what’s going on should somehow stop it but it doesn’t make a difference. I still ultimately don’t understand the point of going on with things any more, that everyone would likely be better off without me and that this is the best I could ever hope for in life. This, forever. Endless cycles that inevitably lead to misery. One day I’m certain it’ll kill myself anyway so why don’t I just speed things along?

The first time I considered suicide as a serious option I was 14 years old. It was shortly after a period of ill health where I had been bedridden. I was very out of it and had difficulty really moving much at all because of pain. It was not long after my pain symptoms had really started to make their mark and the flare up was agonising. A man I was seeing, an adult who I met online, came to visit and watch TV with me, quickly taking advantage when we were left alone in my room. At the time I didn’t really feel I had anywhere to turn and had fallen into a darker place than I’d ever found, I had no idea how to manage my emotions at all and often wanted to lash out or scream. It was a deep pit, right in my core. Like an emptiness that I could feel. I began not taking my pills, an array of painkillers and antidepressants in high doses. I kept storing them up for months, making sure I would have more than enough for a certain demise. A moment of clarity led me to throw the entire pot away, something I later regretted but couldn’t exactly do anything about. It was known I had them and I was confronted about it at a later date, something which heavily reignited my thoughts of it.

As with then, pain is a big feature at the moment, both emotional and physical. I never got over what happened and, while I’ve had some experiences since along the same lines, it’s that one which stuck with me, that I was most ashamed of and find myself thinking back to. Pain is impossible to ignore at the best of times, it’s always there to some degree, both neuropathic pain and joint pain. Sometimes one will be worse than the other, attack different areas of my body at different times and different ways. It’s always varying from awful to wanting to curl into a foetal position and die. In moods like I’m in right now it becomes hard to balance all of the elements of my health. Dislocations seem like a big thing, I sometimes cry over them and I have no idea why; I’ve already accepted my body is useless. The constant clicks and falls, the different pains and sensations. It’s the biggest feature in my thinking about killing myself. A few months of a lot of pain and I could save up prescriptions, wait until I’m alone of a day or evening and take a shower, leave a note on the door saying not to come in and to call someone and say what’s happened. I could take them all, tear apart my wrists or thighs for good measure. I wouldn’t have to put up with it any longer. At times it’s the thought of the act that I want. I want to die but I don’t really know if I want to be dead. Others it’s a longing for a void of existence, it all just stopping and having no consciousness, no care, no nothing. A permanent deep sleep where none of it matters any more.

It’s all going to go downhill from here physically, too, both in terms of pain and mobility. While I’m already very restricted my joints will deteriorate and there’s a good chance my nervous system will go along with it. When my nervous system goes they could insert a shunt or perform exploratory surgery to try and work out what caused the problems to appear and fix it. The unfortunate thing would be the success rate of such surgeries though, and for that matter what qualifies as success; ‘it isn’t growing’.

I’ve always had this thought in my mind, a pre-plan if you will, that one day when it gets too much i’ll end it. It could be pain, it could be mobility, it could just be that it all wears me down to a point I don’t want to deal with it any more. It’s a promise of mercy when the time comes it’s right. There are caveats though, that I must be in a good place, a calm place, reasoned and logical with a firm acceptance that this is right. I’ve considered making it that I have to decide during 2 good, clear headed, calm phases. Choose it once and then agree the next time. While macabre, this isn’t an unkind or depressing thought. It’s always been a calm thought, one I’ve held and explored for a very long time. It’s one of the reasons I’ve not acted on any plans I’ve come up with, for some reason it seems like an important promise.

I find myself grieving for a future I will never be able to have. I always pictured having a career in IT, perhaps doing art on the side. Now I need morphine and taped up fingers to hold a painbrush and my fingers can sublux from typing leaving the need for voice software. This morning at around 5am I was lying in bed, wide awake. I was restless and fidgety, also deeply upset as I was thinking over what to write in this, picking apart my own mind. I wanted to get up and paint, something dark in blues and greys, cold. I nearly did as I have canvases galore as well as paints, but I remembered how hard I found the last paintings and it felt like the desire just hit a brick wall, stopped dead, gone.

I’ve lost a lot to my physical health, almost everything that I love doing is out of reach. Pumpkin carvings, paintings swimming, sewing. That grieving for my future will hopefully one day dissipate or move into grief for the past, but for now i’ll have to make do with what I’ve got, treading water and trying not to drown.

I wish I could offer some words of solace to end all of this on given the seriousness and depth of the post, some message of ‘don’t worry, I’ll be fine’ but there isn’t one. It won’t be. While perhaps one day I may get relief in some of the areas that affect me, presently looking into the mental health side of things, I’ve accepted that my future holds an inevitable decline and while I’m not okay with it I also accept that I have no choice, it’s happening whether I like it or not.

Writing this has not been easy, I’m exhausted and drained. I had seriously considered not publishing it but instead considering it an exercise in self-exploration and to assist in helping to find out what it is that’s wrong. But on the chance it helps demystify mental illness for some, helps them understand the devastating impact it can have not only on a person’s life but personality and experiences, or helps someone find comfort that they’re alone, it’s worth it.

In all it’s messy and intertwined glory, this is my head, my life, me, not me, all at once.