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.

A plea to car and van drivers everywhere: Please stop making our lives harder.

I am a wheelchair user. Navigating the pavements of the local towns in the rural West Country can be an absolute nightmare at the best of times. Drop kerbs lacking where needed, uneven pavements, overgrown hedges, and steep hills. Many places here haven’t caught up with the idea that some of us can’t get up steps which means our access can be limited to certain routes. Given how difficult this makes life in this area for people like me, as well as people in scooters, powerchairs, blind people with guide dogs, or people with pushchairs, I humbly request that you don’t make life harder still by parking on pavements and blocking drop kerbs.

Alternative routes to where you are parking your cars is not always available. Without drop kerbs either side of you, going in the road is rarely an option open to us. On busy roads attempting it can put us at risk. Even if you’re doing it for ‘just a minute’, we don’t know how long you’re going to be there or where you are in order to ask. We also don’t know whether asking you to move your car is going to lead to an aggressive confrontation, as has happened to many of us.

For the past few months in trying to get out of the road where I live to get to the nearby bus stop I’ve found my route blocked by exactly this. Cars completely blocking the main pedestrian exit from an estate which is largely made up of elderly and disabled people. To get around these cars I have to ring someone to help me take another route which I cannot manage by myself, either being pushed over muddy grass or adding 20 minutes to what would be a 3 minute journey, subsequently missing the bus.

One of the drivers in question. Upon requesting he move, he has kindly stopped doing this.

Please, please consider people like me more before you do this. The stress and upset it can cause is far more than many people know.

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.
8220971738_c690466720_b

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

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.

 

Quantifying stigma: pitting the mental against the physical

Content note: Mentions ableism, mental and physical health stigma, gaslighting, fat shaming, eating disorders, death.

Raising awareness to the prevalence and difficulties of mental illness – how commonly it touches people’s lives and the stigma people face, the hardship and stress that stigma causes – is undoubtedly a good thing. When it comes to raising awareness of anything, we find it easier to quantify it’s severity by having a mark of comparison, and with mental health stigma the comparative gauge is usually ‘how we treat physical health.’

You wouldn’t treat someone with a physical illness the same way you do mental illness

This is one of the most popular messages you see doing the rounds when it comes to trying to raise awareness of stigma that’s frequently associated with mental health. We still see metal health as something shamed, words such as ‘crazy’ and ‘mental’ are still thrown around lightly to describe people who have very serious and very real difficulties, and when you’re in the grips of ill mental health those words, those negative messages, they can hit you hard. They can compound negative messages already going around your head and to say that is unhelpful is the Mother of all understatements.

We can see the hardship that the stigma causes, we can express it and we can explain how and why it’s harmful. We can raise awareness of individual illnesses and teach people what the different terms they flippantly throw around actually mean. What many often cannot see is that the above gauge so quickly leapt to for a measure of severity gives away our ignorance of stigma in illness and disability, as well as the parallels between the mental and the physical.

To sit and read social media, blogs, and columnists for various newspapers, people decrying the things mentally ill people are forced to face by a society that doesn’t understand, while steamrolling over the very real experiences you have lived, can be extremely alienating. If you have a physical health problem, chances are you have experienced almost exactly those same messages that you are being told you would never be subjected to.

“You just need some more fresh air, get out a bit more! You’ll be better in no time”
“You need to eat better, the key to good health is making sure you have a good diet.”
“You just need to exercise more. That increases your happiness too, it’ll help you get stronger”
“You need to remove stress from your life, try and relax more.”
“Do you drink enough water? You should try and drink 3 litres a day, there’s a lot that can be fixed just by doing that!”
“You should cut gluten out of your diet. Most health problems are actually rooted in the gut.”
“You should remove caffiene from your diet, you’ll never get better poisoning yourself with that.
“You need to think positively about it. Mind over matter is really powerful. You’ll never be better if you keep being so negative”
“You should try homeopathy.”
“It’s all those drugs you’re taking, they’re making you sick.”
“You need to eat small breakfasts every day”

The list of things people tell you will cure you – if you just try hard enough, invest enough time, put enough energy in, be more positive about, spend money on, ingest this thing, cut this out – is endless and you hear it all the time. People may not necessarily mean anything by it, they just want to help you somehow and giving advice is not only the easiest way, but sometimes the only way they can do it. Realising you have a health problem is like giving up control of a huge part of your life and it can be hard for those around you to accept that things are just as they are.

Whatever the reason for giving their input, what it feels like you’re being given this sugar-coated pressure, this nagging shame, it’s put to you as though it’s in the form of Good Advice but the message behind it is always the same thing. It’s you. By doing or not doing something, not doing enough, not trying, you are the root of all your ills. The underlying message is effectively blaming them for being sick.

One way you can see that underlying message compounded or remove any doubt as to it’s presence is when you explain to someone who has given you this Good Advice that it just won’t help. You won’t get better. Fresh air is not magic. You appreciate what they’re trying to do but exercise is not a miracle. They will sometimes give other, similar advice, or they’ll begin to tell you they’re just trying to help, how do you know if you haven’t tried it? Sometimes they may get increasingly defensive as if you’ve personally insulted them. You can told you’ll never get better if you have such a bad attitude about it, and that you’re not getting better is evidence of this over time.

If you have accepted the fact that you are ill and just want to get on with your life, your illness can still be a big part of that, and there being no happy ending is something a lot of people simply cannot get their head around, and your acceptance is deemed giving up. For a lot of illnesses, the expected outcome is not necessarily a good one and false hope is crushing, but in the face of the worst odds you are expected to fight until the end. You’re not supposed to get on with your life. “Maybe you’ll be the lucky one, there must be something, just do this..”

Sugar coated blame is just one form of all this. Did you know you can sometimes have doctors telling you it’s in your head? That you’re making it up? You can be told that what’s happening to you just isn’t possible, that you’re “crazy”, that you’re imagining it, that nothing is wrong at all. You’re told you’re making up all the pain, drug seeking, even that you’re too young to be in that much pain, or ill at all, unable to walk well.

“You don’t look sick” is one of the most consistent things a lot of people with invisible illnesses get told. It’s as if your failure to fit the very mobility-focused disability chic view society has of illness, pictures of people in wheelchairs or sitting with blankets over their legs, being helped to walkers, nullifies your lived experience entirely. You can experience everything from an expectation to hear exactly how you’re sick in order to prove you are not lying to an outright denial that you’re sick, that you’re clearly faking it, you look too healthy as if that has some homogeneous visual quality.

Sometimes you’re told directly that it’s your fault, whether it’s true or not. Smokers with lung cancer or COPD are consistently reminded of the link between their health and behaviour, fat people are told every health problem under the sun is down to their weight, and you can see the parallels that arise when you see people with eating disorders told that their issue is vanity, people with depression told they’re just weak in character. Even people who are dying are routinely having it suggested that they’ve done it to themselves in some way. It can come up with bizarre and tenuous links through ignorance; told you’re being tested by god, it’s karma, blaming a use of medication in childhood for any variety of health problems, blaming a lack of breastfeeding, blaming poor diet when young, poor upbringing, bad schooling meaning you’re just not coping with what they see as “normal” health. ‘Broken’ families’, lack of a Father figure, too much TV, too much time in front of a computer, not socialising enough.

There is so much stigma around physical health and a lot of it is ignored, misunderstood, or simply tossed aside as flippant commentary you should ignore. It’s emotionally taxing and stressful, and it’s something a lot of people have to learn to manage on top of their health issues thanks to it’s prevalence in our society. You can’t ignore something that won’t ever seem to go away, not least because people so often wish to know “what you’ve done to yourself” at any hint you’re presumed to have a health problem. Over time it can drag you down and put you on edge, you start saying you’re fine a lot because then maybe, just maybe, it won’t come up. You can feel small and helpless the more you are told “you just need to..”, and over time as you’re ground down you start to doubt whether you’re really sick, whether you’re really just lazy, whether you’re really just mentally ill.

All of this is not to ignore that there are also some enormous crossovers with physical and mental health stigma. An expectation you’re depressed or otherwise mentally ill because “how on Earth can anyone go through that and not be?” The aforementioned being called ‘crazy’, imagining things, it all being in your head. If you are already diagnosed with a mental illness, it’s possible that a lot of other, unrelated, health issues get associated with it. Your lack of energy is your depression, investigation over, problem solved. Your pain is worse because you’re clearly not coping mentally, try and remove stress and just relax more. And equally mental health is ignored at times, “well of course you’re going to be stressed with all this going on” when really there is a deeper core problem that needs addressing. Let’s not forget, either, that many people who have physical health problems may also have mental illnesses. You have to navigate the stigma of not just each of them individually, but them both together as well.

Mental and physical health undoubtedly have their own individual issues attached to them, their own stigmas, and when you stand at the intersection of them both you see new ones arise. We can quantify the difficulties of mental health stigma people are subjected to without invalidating the incredibly harmful stigma that looms over physical health. We can explain the harm it can cause to individuals and to wider society, how it stops people from seeking help or ostracises them when they do. We can explain different terms and different illnesses, show that flippantly throwing around terms is belittling experiences people actually have, lift people out of their ignorance and show them that mental illness is not necessarily what they think. We can raise awareness without standing on top of those who are just trying to get through the same.

We can do better than this.

Paraplegia, questions and sex: A tale of squirrels.

Since becoming paraplegic I’ve become very used to being asked questions about my health; friends asking how I’m getting on and if I’m in pain, strangers gently prying and trying to find out what’s wrong and how it happened. Nosey but innocuous questions that I generally don’t mind answering, providing that it’s not done insultingly and they understand I won’t answer if a line is crossed. I’ve been quite endeared over the years by the sensitivity that people have approached the subject with.

Well, most of the time.

There is one subject where it appears that all boundaries and sensitivity go out of the window in a heartbeat. Be it friend or stranger, it’s a subject which arouses such curiosity that no answer is simply not good enough, and there really is no way to tread carefully. Sex.

Can I still have sex? How does it work? Can I still have orgasms? Can I feel it? Can I enjoy it? Is it different to before? From people I have known for years to people I have known for 5 minutes in the pub, as soon as the word ‘paraplegia’ comes up you can almost see the cogs turning as they desperately try not to ask but simply can’t help themselves.

One day last year I’d had quite enough of people expecting to know about my sex life and why I didn’t want to answer. I decided I’d finally explain the difficulties that come with arousal and let alone sex.

It is impossible for me to have sex.

You see, with paraplegia comes a secondary issue surrounding arousal itself. It’s problematic, to say the least, and proves a challenging barrier in sexual relationships which I have yet to find a way around. My poor husband and I have yet to even consummate our marriage as a result of this horrendous symptom of spinal cord damage. I can’t even tell you whether I can feel it, enjoy it, or climax, because there is a vicious and furry problem… Squirrels. That’s right, squirrels.

As soon as the vaginal juices start to flow angry squirrels start flying out of my vagina. Normally grey squirrels, but at certain times of the months, well.. I’m sure you can figure that out.

They don’t just calmly crawl their way out, oh no, they fling themselves. Ricocheting off my thighs and attacking the nearest thing they see. Scratching and biting, looking for the nearest place to nest or some nuts to nibble on. We’ve tried setting a side a plate of food for the, hoping they’d be distracted, but they wouldn’t exactly be the first set of nuts their beady little eyes would see were we to take a leap into the relatively unknown.

Would you really want to go prodding at an infinite nest of angry squirrels with your most precious of appendages? Nope, didn’t think so.

There you have it, one of life’s questions answered for you. Next time you consider prying into the sex life of a disabled person, please remember that no matter how deep your curiosity, no matter how desperate you are to know how another person’s body works, they could well have a devastating affliction involving wildlife. To constantly be reminded of this is deeply upsetting. Please, remember the squirrels.

Alternatively don’t be a cocktrumpet who goes around asking people, unprompted, about their sex life.

Painting by my friend Saria, http://www.prettyshittyart.com/