They can take my body but they cant take my freedom* Thursday, Oct 13 2016 

 FREEDOM! -  FREEDOM!  Braveheart

It might have taken 2 years, 3 instructors and 3 addresses, but I have passed my driving test first time. Hoorah! For many people this is some sort of life milestone for teenagers or an added tool on the C.V. to expand employment opportunities. But for people like me it is a psychological, physical, and hugely personal achievement. It has ramifications I cannot begin to know for both my psyche and my external life. Of course, passing the test itself would be little good without the car, and thanks to the generosity and love of my family that has manifested. But there was more to the test itself than may first appear.

At the age of 18 I was told by a Rheumatology Consultant that I would neither drive, nor have children, because of my health. It may have taken 6 years and various medications with plenty of support from my family, but I can drive. A manual car. Alone. With no support. So much for that prognosis, thank you doc! But before I could grow accustomed to the new found freedom, I was simultaneously confronted with a psychological shock concerning my child-bearing capabilities. Rendering the motoring accomplishment rather moot. Psychologists feel free to have a field day at this point.

It may have only been a few days but I have already come to think of my car as my legs. For the first time ever I have been able to go shopping alone and spend as long or little as I wanted traipsing the aisles. I have spent time browsing (in stores!) for a toga for a Classics Symposium I will be going to and getting to on my own. I have joined the local Leisure Centre to start swimming (another personal growth thing for a hydrophobe with a muscle complaint and fatigue issues). All this within days of having my own car outside my house. I’ve got to take things carefully of course, spending the evenings resting after an hour out and about, and it will take me a long time to get used to my car-based limitations.

Swimming was a shock. First time I have ever been to a pool alone and while all the staff were lovely I was shaking top to bottom after 15 minutes, my throat hurt like I’d been running (a sensation I have not been familiar with since cross-country running over a decade ago), and my stomach is still cramping. It is hard to tell what was the fear from being in the water alone, and what is exhaustion from the (admittedly pathetic) exercise, there could be some embarrassment factor in there as well. Still, at least the entire experience was free (bar the 20p for the locker). If I can at least master the shakes so I can get home, I might be able to go frequently enough to actually build up some sort of musculature, though the prospect is terrifying – not of having musculature but of having to swim to get it.

In summary, I have a new metallic body that allows me live a much more normal life, and compartmentalise my condition into a smaller box which is more of a consideration than a condemnation. I should see this as a fingers up to the negative prognosis given to me six years ago, and an encouragement that my life might not be as bleak as I foresaw. But it isn’t an instant fix, and has come to replace another physical and emotional crutch. I have yet to know how much more free I am, how free I really want to be, and more importantly who this car will make me now.

passed driving test

*This blog post has been imported from womeninecstasy.wordpress where it was posted in 2013.

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Epiphany* Thursday, Oct 13 2016 

The past days (since the Academia Is Failing Its Young post) have involved a lot of tears, emails, phone-calls, and soul-searching for me. You see, I have wanted a Doctorate since I was about ten years old, and that was the one and only plan I ever stuck to throughout my life. I always felt like I knew where I was going, and that I had the advantage over those poor indecisive fools who did not even know if they wanted to go to University, let alone what subject to do or what career to follow…

But the problem is I stuck to that plan relentlessly in spite of all obstacles. Which was either brave, or foolhardy. It is hard to tell which when you are in the middle of it, and friends and family being naturally a little sycophantic does not help to clarify matters either. It also does not help when you are not really informed or aware of the realities of life, regardless of the reason (see U-naive-rsity). But I was not diagnosed with fibromyalgia until I was in my first year of university. During the first year or more I was pretty much in massive denial, or at least not realising the full impact of my conditions, when it came to not considering my future options. I just pathologically stuck to what I wanted to do as it retained a sense of normality I felt was lost to me when I found out my life would never be normal.

I failed to see what impact the FM would have on my plan of ‘just studying for a doctorate’ but the truth was I barely attended my lectures, could not go in frequently enough to see my supervisor, and most of all – my pride led me to take on additional stresses (like producing a play) so I could prove to myself that I was the same as everyone else and could do all the normal things other people do. Languages were the major struggle for me because, while I enjoyed them in general, I could not attend every single class consecutively. And once you miss one, you struggle with the rest as you miss a key concept (like what the past tense is). In sum, language-class attendance is essential to high-performance and failure to attend = low performance, and low performance drags your entire degree grade down. So I thought it best to avoid them altogether, for the sake of the higher grade at the end. Made sense at the time. Still blindly thinking I would be able to do a PhD and ignoring the language requirement as it reminded me of how limited I really was in my skills, and desperately trying to compensate for them elsewhere – by home study etc.

Ultimately, I did not come out with a first, and my dissertation was fractions short of a first. My supervisor admitted that it was largely errors in verbal presentation which could have been avoided had she seen more of the work – but I did not go in enough / overworked myself in subconscious response to my feelings of inadequacy. I still did not change my plans or take stock.  But plunged straight into the Masters as ‘a Doctorate is the one and only plan’ and my illness does not affect my brain so why should it affect me studying? Still blindly ignoring the fact that I just was not qualified enough, and that being able-bodied in whatever small way does play its part in my education. Even if it just the added time and stress given over to proving my conditions, or seeking help, or the absolutely soul-destroying despair of having no money because you are waiting on benefit claims (which took up the first three months of my MA).

It has taken the turmoil instigated by that one small request on the Classics List.Serve group, and the many responses both extremely kind and more off-putting to make me reconsider. My first reaction (‘I still want a Doctorate’) was to apply for a long distance part time course to give me as much time and flexibility as possible. But part of me, deep down, was still uneasy though I did not know why. Then I had another email which, whether right or wrong in its opinion, brought it all home to me…

Why?

Why are you still pursuing this unrealistic goal, as if nothing has changed, as if you are qualified?

And perhaps more importantly… Are you even enjoying it any more?

I love learning. I have always loved learning. I have a ravenous interest in so many subject areas. But, no-one is making me stress and suffer, and cry, and feel useless, or like I have made a mistake, or that dread feeling of despair that I have no future  because the original plan is no longer viable. Only I am making myself feel that way by relentlessly pursuing something that I just don’t enjoy any more. All the inquisitiveness and the joy has been sucked out of my studies this year. I have begun to despise the work, (not the knowledge) but the endless writing of essays I have no interest in, or the petty corrections (humankind not mankind!). Then I realised it is all entirely self-induced. It is all my choice.

And, I choose not to do the PhD any more. At least, not any time soon. I cannot afford it – I live on benefits with no disposable income. I am not qualified enough, and possibly never will be because I despise language learning. There is no funding for over-enthusiastic under-performers. There is nothing to stop me reading, nothing to stop me writing, nothing to stop my theories and my summaries, nothing to stop me telling or teaching others. Nothing to stop me learning. But why should that ‘learning’ come at such ridiculous cost, under such ridiculous stress, with such little support? For a piece of paper?

I suffer enough. Every day. I fight to get up the stairs, I fight to stay well, I fight to live the dregs of a normal life. Why should I also have to fight tooth and claw to prove myself to people who will never accept and support me? Why choose to struggle so hard and pay so much for the incredibly critical recognition of others? It is like Newton and Hooke all over again. I do not need shining acclaim and public acceptance to produce knowledge of worth, or to follow what I am inquisitive about. I can do that myself, in my own way and in my own time – and ultimately on my own terms. I know the decision is a right one because I no longer dread 2014. I feel excited, and I am eager to end this daft course to start again and once more be doing something that I love.

So, this September (or December) will see the end of an era. No longer a Classicist, no longer a student. But the birth and manifestation of the one talent that I know I possess – the writer.

 

 

*This blog post has been imported from womeninecstasy.wordpress where it was posted in 2013

I want to break free…* Thursday, Oct 13 2016 

I have come to realise this week that the dreadful misery I have been feeling is in part due to an on-going problem I have had for the past 6 years concerning my health. The problem has ended relationships, caused waves of extreme depression, and yet I always seem to forget about it or ignore it and so never really fixed it. I guess I felt I couldn’t fix it and would have to learn to live with it.

The problem is the amount my disabilities render me housebound. Today is the 5th April and I have not left the house on my own since the 27th February. That is not to say I haven’t left the house at all, because I have, thanks to friends and the OH. But I have not independently operated as my own person outside of my house in over five weeks. My health makes this hard because walking is extremely painful, where I live is very hilly and so to get to the main road/the nearest corner shop I have to climb a flight of very steep stairs, and when I say climb it is practically hands and knees. There is a train station about a 7 minute walk in the other direction but not only does it not go anywhere useful, it also means climbing back up the hill to my house when I get back. The problem with conditions like fibromyalgia compared to disabilities which leave people wheelchair bound (as scary and dreadful that may be) is that not only do you look well, so people assume you are and don’t offer you seats on buses etc., but also you are in pain all the time, and exercising causes more pain. So you might feel well on the walk to the shop, but you sure as hell don’t feel well on the walk back. Let alone if that walk back involves carrying any shopping (when a pint of milk is too heavy for you), or if you have walked around a shop for half an hour/done some sort of fitness class – even yoga.

So I stay in my house. Living alone, with only a feline for company things can get very isolated and very depressing very quickly. There is only so much house-work and studying you can do when you haven’t got food in, or you’re out of milk for tea (everyone knows you cant write essays without tea), or you’re anxiously waiting for the postman to arrive just so you can see another human being and disrupt the monotony briefly by opening mail. I always feel momentarily sad when there is no mail, and I never understood why until now. That is not to say I do not get help from friends and the OH, of course I do, and I am so grateful for it. But in a way it only highlights everything I feel I cant do for myself. And there is nothing worse than being left, or dropped off home, for another indiscriminate amount of time, could be days, completely alone. The side effect of this of course is that when I do spend time with people, I never shut up because I have been socially deprived for days or weeks and I get very excitable and chatty which a) makes everything seem all right to other people, b) enhances the feeling of solitude afterwards, and most of all c) hurts my feelings when people tell me to shut up because they have been out at work and want to relax. Of course they do, that is entirely normal and not to be begrudged. But I have been on my own and sometimes I would give anything to spend a day in an office full of people.

Living alone was a huge step for me. Fears about my health and coping with the house and what happens when I faint or cant get out of bed etc. I have coped with all of that marvellously and the house is generally clean most of the time (because I have nothing better to do). But I didn’t entirely expect the isolation I guess. The main problem is that no one else is responsible for ‘keeping me entertained’ or visiting me/spending time with me – and nor should they be. I don’t want to feel like a charity case or that my friends feel forced to see me when they don’t want to, out of a feeling of guilt. But that doesn’t mean I don’t suffer with it, and it doesn’t make things any better. Even at home I have very few people to talk to, my mother on the phone (but then I can’t afford the bill!) or the odd person on facebook, but that is about it. There is no human contact, just me in silence every minute of every day. It makes me angry when people say, ‘oh I would love a week to myself like that’. Yes, of course you would, because you spend every day with people, free to go out and free to stay in. Most new mothers who feel this isolation have their partners at night, or their families or they can drive, or have a night out when they can get a babysitter. It isn’t imposed on you for the foreseeable future.

So, I’m going to take up driving lessons again, though I can barely afford it and it will use up any spare money I have. Even if I cant afford a car any time soon , I will be able to leave the house, do something useful, and talk to at least one other person. It’s a start, it’s something I can do for myself and most of all, something that lets me leave the house, even if it is just for an hour a week. It’s better than once every three months!

*This blog post was imported from womeninecstasy.wordpress where it was posted in 2012

U-naive-rsity* Thursday, Oct 13 2016 

I’ve been doing a lot of thinking this week about the word ‘naive’ and what it really means. Of course, most people see it as synonymous with innocence and associate it mostly with childhood or youth. I disagree, and I think it is best understood as antonymous with the word ‘informed’. That is, people tend to think naively when they are not informed of the reality. When I say reality, I mean the actual, brutish, crippling truths of life which are so counter-intuitive to everything you hope and learn in your youth. It is no small wonder why people get more bitter as they get older. This is because they become more and more informed about the way the world really works, and they realise that everything they wanted or believed is gradually taken away from them and crushed.

As I may have said before, when I was at school I was always made to believe that being clever was useful to you. It gave you purpose. I put up with years of psychologically damaging intensive bullying for being clever (I was pulled out of school for trauma) because I thought it would benefit me over them in the long run. I pushed myself to excel in all subjects so I could go to the top university for the top people – and when I say top, I meant – the most intelligent. After all, universities are places of learning, so it makes sense that the best will be full of the brightest. Doesn’t it? NAIVE.

Along these lines I also assumed that I could become a Dr in a field because I was such a consistently high achiever. Being clever became part of my identity and it was all I had that was mine alone and would never leave me. When I was diagnosed with FM and HMS (see blog below) and was told I couldn’t have children, or do sports etc. it became even more intrinsic to my identity. I am clever, this is who I am. Without it I really do have nothing, I can’t even push papers around a desk because I am sick. In this way, any poor mark was like being shot in the chest – a C? But I’m clever! which of course makes university very traumatic for high-achievers when for some absolutely inane reason a First (or A) is 70% or higher, and a 2:1 (or B) is 60 – 70%. Why have 30% which is all but unattainable? I  have never heard of anyone scoring in the 90s. So why not shift the bars higher? Unless it is deliberately to shock and traumatise young naive people. As I also said before, believing you will gradually improve is also NAIVE. The truth is that success in your modules will depend almost entirely upon whether or not, or to what extent, the tutor is an arse.

When I spoke to my tutors at college (one of them being an old-school Cambridge graduate) and said I wanted a PhD in Classics. Not one person said to me, no chance – you haven’t had a private education/learnt Latin, Greek, German, French and Italian before you were 16. If they had, I might have either done the languages at College, or chosen another degree like psychiatry or English, and turned to teaching. Instead they let me go blindly off and apply for Cambridge. Only to find out that a) I come from Norfolk so chances of getting in were the least (their intake from Norfolk is lower than any other county so not being a scientist my chances were zilch) b) after an hour shock-test establishing I was incompetent at languages entirely and c) I applied to the most misogynistic college which you could only possibly know if you were ‘in’ on the clique. So, thinking I could do classics at Cambridge based on the simple fact of my fierce intelligence = NAIVE.

But I still did Classics. Foolishly. No one told me I couldn’t teach it without Latin until it was too late for me to learn it. And no-one told me an MA or PHD is entirely pointless and impossible unless you’re a linguist. So, it was incredibly naive of me, again, to think that brilliance, or 4 degrees was going to be enough to let me pursue my life goal. It was naive of me not to have given it all up sooner. Changed course when I hadn’t invested so much money. But we saw this all in the post below. My other point is that no-one told you there is no money either. You have the impression that being clever and high-achieving would be enough to finance the courses. Well it isn’t. Being uneducated in the finesse of politics because you’re only a child or teenager meant that you were not aware of fees increasing, and you certainly weren’t aware that the subject you love is rock-bottom of the government’s agenda. Thinking that all knowledge is good knowledge, and learning worthwhile in its own right regardless of discipline… NAIVE.

Finally, it is naive to think that being crippled doesn’t prevent you being equally valued, or that people will accommodate for you to give you the same chances as everyone else. The reality is, whoever you are, no one really cares about your problems. No one can fix them, and that every problem in the world is too big for anyone to change. From reforming education to reflect the needs of University (or vica versa) to employing a benefit system that doesn’t make the cripples feel suicidal. We are NOT equal, and we should be taught this at school. Being born in Norfolk undermines your chances at university, being state educated undermines your chances in further education and employment, being ill makes you about as useful as a well, most other things are more useful than you. We are not born into this world fully aware of how everything operates and yet we are expected to make life-decisions with no honesty from those more experienced than us. And having hope that you can make a difference, set an example, break the mould, be the change you seek in the world, ultimately… NAIVE.

*This blog post has been imported from womeninecstasy.wordpress where it was posted in 2012

Academia is failing its young* Thursday, Oct 13 2016 

Now, I do not know about other universities or disciplines, but for all you other supremely intelligent people, am I the only one who thinks university was a complete let-down? Or that the experience, knowledge and wisdom you hoped to get for the (now) £27,000 you paid was about as much use and value as… well… it wasn’t any use or value? Yes you were probably taught the subject matter in either too many or too few lectures, so the university are kind of doing their job there. But they were taught largely by lecturers who were more interested in their own research than teaching effectively, who don’t like undergraduates/students/anyone, and probably don’t speak English at an effectively communicable level. (That isn’t some kind of Euro-phobic bigotry, it is a fair expectation that anyone who works in a communicative job in England should be able to communicate in English, in much the same way as I would not teach in Spain unless I were fluent in Spanish). So, you learn everything you can from your lectures, and yes, if your attendance is poor then don’t be disappointed when you don’t understand as much about that particular area as you probably should.

University Marking Systems

But then, alongside the lectures, in the Arts at least you have this wonderfully arbitrary system of marking. Whereby every student I have come across in the Humanities has complained at some point or other that they are having to cater different essays for different markers because otherwise they get penalised for their style or their argument depending on the temperament of the marker. However, I have had it explained to me, in certain terms by a senior member of staff, that such arbitrary marking within departments is not the reality. Yet, some of the brightest or most successful students manage to get over 70 repeatedly from one tutor, and under 55 repeatedly for another, and they can’t all be terrible at that second subject, surely. My recent experience with another university has also corroborated the truth of this arbitrary marking. In a particular module under a particular tutor I received the marks 75, 76, and 70 (in a grade boundary system of 70-85 = 2.1 pass). When I appealed the 70 and was shifted to another tutor, my mark was changed to 85 and my subsequent essays have also been 85. This has led to an investigation of the other two marks. So, it seems that your mark can jump nearly two grade boundaries dependent on the tutor marking it. This is not that surprising when you consider that they too have no doubt come from different university systems and received their doctorates after different training and different emphases, no doubt because they had to pander their essays and papers toward a particular bias at their university… and so the cycle goes on. Meaning there is no objective marking system within higher-education (at least in the Arts). Of course, most essays are second-marked in the interests of fairness, and you do not know who this second marker is a majority of the time so you can’t cater your essay for them like you could the original marker. But I don’t think I am the only person who gets the feeling that second markers just see the first mark, scan the essay and agree with it, minus/plus one or two points. When they are dedicated in their marking – there seem to be discrepancies which just highlights the issue already at hand – namely, that university level marking is entirely subjective and therefore – that university degree marks are arbitrary and not truly representative of the student’s talents or intellect. Of course, one will expect even the gifted student to perform poorly at one or two essays in their entire undergraduacy and much as it comes as a shock, these students will generally accept that they did rush it off or weren’t really concentrating when they produced that particular essay. They also learn to appreciate that while they may never have got under 90% at anything in their life, university marking is different, and that the essay writing is harder and entirely different to everything they have been taught before. But you would expect such talented students to gradually improve as they learn the system and not peak and trough depending on which modules they are taking under which tutors.

This leads to another problem which arises from the subjective marking of tutors – namely that most students who wish to perform highly that I know of, in either their second, but definitely their third, years – chose modules because of the tutor and not the subject matters. This means they are choosing modules that they have no interest in, and that will not be helpful to their careers or their postgraduate education because they know the marks will be better. What a sorry state of affairs that students in liberal arts are not pursuing their interest fields for the sake of their final mark because of the shoddy marking system they have to contend with. Furthermore, it is not surprising that there should be discrepancies in the marking of the tutors when they have all been taught different essay-writing techniques themselves, and worse that the students aren’t taught how to write university level essays to a departmental guideline. The university/department, I expect, thought we would be taught that at high school or college/sixth form. But, depending on the schools you went to, some children aren’t taught how to reference (let alone the difference between Harvard, Chicago and the million other systems), in fact most of them do not know what footnotes are or how to produce a bibliography. Secondly, they are not taught how to quote, some high-schools still teach that quoting should be in italics. Students are not taught how to critically approach a source, or how to find material. The sources they are taught to study in history are not the same as academic sources or scholarship and so most first year university students don’t know how to quote, reference, or effectively use any modern scholarship. If, by chance they have gone to a higher performing or private school where they have been taught academic protocol then there remains the likelihood that this academic protocol does not corroborate with that of the university anyway. Therefore, in the interests of balance, and giving their students a proper start to their degree – the department should be enforced to teach essay writing skills and allow the students a practice essay or two which will be marked on presentation, and style. But, some may say, the first year does not count toward final grades (at some universities) and so that is the practice year. True as that may sound, I know that I wasn’t given adequate style and presentation guidance on my essays in my first year. Luckily, I had learnt mine at another university which seems to have a better handle on breaking students in to higher level writing.

Linguistics

Provided you get over the arbitrary marking and the lack of skills you have been taught, and as a bright and confident-in-your-abilities type of person you have also taken the stomach-wrenching shock of getting something marked in the 50s, and 60s and/or generally had all the stuffing knocked out of you and your self-confidence and dreams crushed by the university system, provided you have got over all of that – what happens next? Well, some may say – you pursue postgraduate education.

This is where the real fun and games start. To begin, you may have gone to university with the sole intention of pursuing a Masters and a PhD. After all, you’re bloody brilliant and you’ve always found being clever is part of your identity and probably the only thing your good at. So it makes sense that people like you are the ones that get PhDs and become super world specialists in their fields. Wrong. Well, at least, wrong if you haven’t come from an affluent background. Don’t get me wrong, as a descendent of a Marquis I am no anti-elitist or radical socialist, but as someone who has also come from a disadvantaged background (or should I say quite average to good, free school for the general public), in Norfolk, I am pretty much bottom of the academic food chain with a limited chance of success irrespective of my intellect. No one discouraged me to pursue Classics, but nor did anyone tell me (including the university for the first year and a half) that to do Classical Civilisations or Ancient History or Classics or Archaeology etc. you needed, really, to have done Latin or (and!) Greek before university. Which is just splendid, considering only 10,000 pupils a year have the option to take Latin  (and I imagine less than ten of those are in Norfolk). So you are accepted onto the university course with no languages and no language skills, the expectation being you learn Latin and Greek throughout the degree – which means you only get to learn four other modules (opposed to the eight you can do without languages). Oh, it also depends entirely on you being a natural linguist which, with no linguistic experience, you probably aren’t. So, following the guidance of your departmental staff, you drop languages (which are ruining your overall mark) and are encouraged to broaden your general subject knowledge instead of wasting time trying to become an expert in Greek and Latin in two years (realistically, considering all the time you have off). If teaching is your goal, then you find out (too late) that to teach your subject, which is all you wanted to do, you have to have Latin to a high level (irrespective of whether you intend to teach Latin, or whether you might have passed Greek), which in other words means you had to have done it before and during uni (which no one explained to you), or you have been amazingly talented at learning it while at uni (probably because your school taught other languages which you were good at also). In other words you’re buggered. Another dream crushed.

But, then you think teaching was a back-up plan. I really wanted to get that doctorate remember? So you are accepted onto a postgraduate course, you are of course paying for this, because being clever is not, I repeat not the measurement for funding awards. Again, no one has told you that languages are the ball-breaker. Scholarship is of course written all over the world, and a lot of it isn’t translated into English. Which means you need to be fluent in some, most or all of the following: French, Italian, German, Dutch, Spanish, Catalan, Greek, Russian, Turkish and even Korean. And as I learnt today, reaching out to fellow classicists for some help sourcing English translations may well lead to a public exorcism. Older scholars, or younger scholars from more advantaged backgrounds, forget that students are not taught Greek and Latin before university, and when they take these up during their undergraduacy, they do not have the time to learn three or more modern languages to a fluent enough level which allows for translation of specialist academic texts. And even if they did, they were never told they should so they remain ignorant to the fact while blindly pursuing a course they are hugely disadvantaged in. But of course, at least the institution has all their money from the student before they realise that ultimately, there is no where to go and they have probably wasted four or more years of their life because they are not multi-linguistic.

Much as I hate to pull the big D card, I find it disheartening that intelligence is not a compensatory factor for coming from money or being disabled. Stephen Hawking being the exception (probably because he is a physicist and not an arts scholar). So, if one is disabled and cannot earn the money to pay for a better education, or if one is intelligent but not rich, or intelligent, disabled and not rich – the chances of you succeeding in making use of your intelligence succesfully are poor compared to less-intelligent but better educated (yes that isn’t an oxymoron) well-moneyed types who can swan through with a broad array of languages (they probably went on holiday three times a year and put these languages to good use) but no other intellectual skills. So, to be an (Ancient) Historian not only do you have to outwit the system, pre-empt information that you are not privy to at decision-making ages, teach yourself the necessary skills in advance, but you also have to be fluent in four or more languages (two of them dead) at the age of twenty. None of this has anything to do with natural intelligence, or how studious you are, or how well you perform at GCSE and A Level – though of course you have to have nailed those too…

*This blog post has been moved from womeninecstasy.wordpress where it was posted in 2012,

When I say totally f*cked (2012)* Thursday, Oct 13 2016 

I have been wanting to blog about this topic for some time. But I was not entirely sure how to treat such a serious topic with an air of light-heartedness until I made a realisation today. The topic is unseen disabilities, in particular those disabilities which are manifested in extensive, untreatable, miserable pain. But I have had enough with having to explain myself or feeling ashamed when people stare at me or look disapprovingly when I use a disabled parking bay. I think for many people who have unseen disabilities they feel their illness defines their life and they cannot get away from it, going so far as to keep their conditions secret in a desire to come across normal to strangers and acquaintances. Indeed, some people advise that you should not let your condition rule or define you and that you can live your life without giving in to it. But I think recognising your condition, accepting it in your life and freely talking about it is healthier, though many are scared to do this. Adam Hills, the comedian has made the move to create an open dialogue about disabilities, so here is me, responding from the unseen disability side!

I travelled to University (an hour away) today in a taxi because the public transport alternative means I have to deal with thirteen or so flights of stairs, a bus and a train (and the standing waiting for them or standing on them that this entails). This is a huge feat for people with conditions like mine and is daunting every time I have to consider it. Stairs are my worst nightmare, the make me feel sick to the stomach with dread. What if I faint, or simply cant manage halfway up? What if I am late for the train and have to run? Why are the lifts always an extra walk, and why do I feel foolish getting in a lift at a train station without a suitcase? But, in my taxi ride home I mentioned something about having crappy muscles and then changed the conversation as you never want to sound like a martyr or a freak. But I was surprised when the taxi driver asked – ‘what is actually wrong with you, if you don’t mind me asking?’ This has probably happened to me several times before now but I always felt like the question was invasive, or carried judgement: ‘what is wrong with you?’ [or as I hear it – but you look fine]. But David the cabbie seemed genuinely interested. So I told him. Well, I told him what I tell most people – that my muscles are weak, my nervous system is shot, and my joints are knackered to boot. I don’t think even an hours drive would be enough time to tell him what is really wrong with me.

That is… I have fibromyalgia (FM). And hypermobility syndrome (HMS). These are two, unrelated and unseen clinically diagnosed conditions. That means they are not diseases, they are not genetic and they are not diagnosable by some blood test or scan. They depend on the doctor’s experience, expertise and judgement. This also means it can take ages to be diagnosed in the first place, which means years of believing you are going mad with a condition that seems to be ‘all in your head’. For many people it can take years, or even decades to find a competent doctor or consultant who gives you the correct diagnosis. I was lucky. It only took 3 years for my HMS to be diagnosed, and 5 years for my FM.

Bendy Bendy

HMS is the easier condition to talk about. Many people have some ‘double-jointed’ bones with no discomfort (this is called Hyper-Mobility) – it enables them to swim, hurdle or play the violin by extending the joints further than they should be able. It is in no way debilitating. Hypermobility Syndrome on the other hand is characterised by the added P.A.I.N. in joints and muscles. Symptoms include: joint instability which causes sprains to dislocations, joints that click, joint pain, temperomandibular conditions (in the jaw) and nerve compression disorders, among others. Though it is not curable, HMS is manageable if the patient maintains an extremely fit and supple body to support the joints and prevent injury (think Jessica Ennis here), as well as making day to day life adjustments and possibly some medication (though many of these are trial and error). Another symptom of this condition is high tolerance to anaesthetic and pain relieving medication, meaning there is nothing to control the pain! The condition is often widespread along the entire skeleton, making the sufferer feel as if they are trapped in a house of pain. On the plus side, my rheumatologist said, one could be very good at yoga and contortionism, if one were so inclined…

contortionist

Hyper-Mobile Contortionist

Death by a Thousand Needles, anyone?

Now, fibromyalgia is the more interesting condition. In my experience not many people are aware of it, unless they know someone directly who has the condition. FM is known as the ‘affects everything disorder’ or the ‘death by a thousand needles’ condition. In short, the extent of the symptoms and effects of FM leaved you totally f*cked. And not in a good way. In fact, you’re probably so knackered and in so much pain that having sex is off the menu anyway. Or leaves you bed-bound for a few hours/days afterwards (mind you I think some men like that idea). They certainly always raise their eyebrows when you say, ‘I have HMS – it means I am extremely supple’. At least until you add: ‘but you’ll probably dislocate my hips in the process’ then they look less keen.  Anyway, back to fibromyalgia.

To give you a general idea of the extent of condition let me give you some illustrations:

FM symptoms

FM symptoms 2

As I said: f*cked. For those normal people that don’t read medical Latin I will offer some translations. Dysmenorrhea is excessive menstrual pain; as in, full blown cramps, going in to shock and fainting, trips to hospital every month – that kind of menstrual pain. As a ten year old I honestly considered a hysterectomy, that sort of menstrual pain. Esophageal motility disorder is difficulty swallowing – which is never polite when you’re eating in public and you suddenly need to wretch, or worse at your first dinner with the mother-in-law when you are trying to be charming and having to run to a bathroom to regurgitate her lasagne. Multiple chemical sensitivity is, for me, the most interesting symptom of the disorder. It essentially means that various stimuli that are not painful for normal people (allodynia) like air pressure, smells, touches and sounds are painful to the sufferer. That is, physically painful. As in, touching that car seat feels like sandpaper on my skin and makes my stomach heave. Or, that change in weather has given me a migraine and now I can’t see. Or that petrol stations are the devil. This is, of course, wonderful when you are trying to go around your normal daily life without looking like a freak or passing out. That is not to mention the general muscular pain which is everywhere, and the inability to exercise which makes you fat, which makes you weigh more which makes the condition more painful… Do you still think that a young woman with no apparent physical illness using that disabled parking bay is some benefit cheating, blue badge robbing bitch?

Spoons

One of the best analogies I heard about dealing with conditions like this was the Spoon Analogy. Imagine you were given 12 spoons at the start of the day while you were in bed and every time you had to do something you lost a spoon. Once you have lost all your spoons that is it you must stop where you are and lay down, that is your day. So I have often asked people ‘what is the first thing you do in the morning?’ and they normally respond with ‘I dunno, have a shower’, or ‘get dressed’. ‘No’ I say, ‘you get out of bed – that’s 11 spoons. Then you have a shower, 10 spoons, wash your hair or shave your legs, 9 spoons, towel yourself dry, 8 spoons, dress yourself, 7 spoons, go downstairs, 6 spoons… you’ve used half already and you haven’t even left for work yet.’ This often gives people pause for thought. But then they say ‘how do you manage?‘ and you say, what else can I do? Other than track down Alanis Morissette and give her that damned knife, of course.

However, while the Spoon Analogy gives people an idea of how limiting the condition is in your normal life, it doesn’t really get across the pain and the fatigue. I like to imagine it as asking someone to carry a rucksack equal to their own body weight around with them all day. Then occasionally jabbing them in the knee, finger, eye, shoulder etc with a sharp needle every so often. When they have flu. THAT my friends is a normal, probably going quite well day for people with FM.

*

This little ramble hasn’t really covered the half of it. But I am glad that some of you may read it and maybe think more about those odd people who get lifts to the first floor or look shattered all the time. Remember, for people like this, meeting with you for coffee is a precious spoon, and shows you are hugely important to them. Also remember, when they are having a good time and maybe exerting themselves a little, it doesn’t mean they are well. It means they are fed up with living in a cage of pain and will take the consequences (a few days in bed) for their actions. It’s not all bad news though! Though they’re not curable, the conditions are sometimes manageable, and people’s lives can be made much easier by having knowledgeable and supportive friends (and cabbies!).

*This blog post has been moved from womeninecstasy.wordpress where it was posted in 2012.

The scariest moment is always just before you start… Thursday, Apr 24 2014 

 

 

So, I have sat up nights upon nights with fear and confusion gnawing at my middle and running rampant through my mind. I have mused, considered, examined and dropped countless fruitful and futile ideas. I have cried. I have decided. I have been disappointed and frustrated at the results of those decisions. I have felt as if I could make no choices without the most sincere counsel from my own college of specialists. I have whinged, wailed, whimpered and whined. I have pondered in silence. I have escaped in novels and in the garden. I have rung my mother. I have now come to face the facts, I have reached a state of contented bliss and well-being which can only arise from  a correct decision well made. I have chosen penmanship.

In truth, I began work on a series of fantasy novels when I was around fifteen, and have been fiddling and compiling, map-drawing and plot-forming in those odd snatches of time between degrees. But I have never had the time, or possibly the desire, to devote a specific stretch of time to my keyboard. With one Masters off the table, and the other temporarily financially inexpedient, I am in limbo. The risk to my health and passable security is too great to consider jumping to full-time, or even part-time, work. So I am stuck, for the next sixteenth months or so, in a sort of achievement-less, purposeless, void of soulless, mind-numbing inanity. Bliss, to most people apparently, though I would challenge anyone to enjoy two years with no job, no people, no money, no T.V. and horrendous ill-health. So, I have taken a cognitive prayer, an emotional deep-breath, and decided to devote the next twelve months to writing something publishable.

Though of course, I sit down to write my novel #DayOne and find that my USB stick (containing my entire fantasy database of the past decade) is noticeably absent. So after re-drafting my map…

Image

 

… I have no place to go until I recover the data. But no fear! It seemed pointless angsting over something that will inevitably emerge in a peculiar place, so instead I have decided to expand my ‘Homer’s Odyssey: Astronomical Epic‘ thesis (sitting pretty at 15,000 words circa 19th April) into a book which I will attempt to publish. ‘Tisn’t fantasy, mind you, but it IS certainly comprehensively publishable. And I so love writing it. There is nothing better than the electric cerebral rush that comes with making a new discovery. It hardly matters that the genre is so obscure that nobody will understand it if I told them, what matters is that I know it is there, and that the universe (well, the Archaic Grecian Universe, at least) has been made just a little bit tidier.

So I have sat, and typed, and read, and highighted, and printed, drunk copious amounts of tea, and sung. Loudly. I am now the proud owner of five chapters from the second section of my proposed masterpiece, and the mother of 21,038 words of intellectual obscurity, I think wonder may largely depend on your point of view as a reader. The fact is though, my backside aches, my spine feels twisted, and my shoulders feel as if they have rolled over onto my breasts, I am so content. I feel productive, I feel useful. I can barely stand to leave my desk, and get piqued when someone has the audacity to phone or text me. Five days ago I was so dreadfully alone, so woefully bored, and so terribly depressed. But now, my artificial pen has hit the cyber paper and I am free.

 

If YOU want to contribute to my novels, then fill in this single question questionnaire to choose the names for the nomad tribes of Saäg who forever wander the desert of Jotnar-Feldur:    https://www.surveymonkey.com/s/RXZNZ5T

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