|This post was actually inspired by one of those quizzes you find on Facebook. The quiz was called "How Much Do You Hate Yourself?" (The answer the quiz came up with was far removed from reality. It was too positive.)|
I know I can be many things to many people (depending on what mood I am in at the time). I can be the most annoyingly loud human you have ever met or you might end up wondering where to find a magic tin-opener so you can get me to open up and actually speak to you.
One thing you may be surprised to learn is that I am not the most confident person on Planet Earth. I also find it extremely difficult to accept compliments which are based on something about me as a person. My shoes or clothes are things I will accept compliments on - things like "bravery" or my writing are the dodgy ground,
Before this escapade started I always felt like I had to compete with everyone else - even when there were mitigating circumstances which meant I couldn't do what they did or get what they had in terms of friendship, treatment, etc.
I always looked for the "But" behind a "well done" - as in "Well Done - but you could have/should have..." This may sound strange but nobody judges me to a higher standard than I judge myself. I want to be exactly like everybody else - do what they can do, be judged by the same standards, etc. Not for me the "we have to make allowances because of her sight - she can't do what we can" - if "she" is determined to do something "she" will get it done in whatever way possible. Stubbornness is one Dutch trait I am very proud to admit to.
The biggest change is the fact I actually feel more comfortable as me. I can actually allow myself to play by my own rules. That might sound strange to you but I am much happier knowing that I can be who I am and not have to worry about whether or not I match up to the expectations of others (most of the time I don't match up anyway).
A byproduct of that is no longer feeling like I have to conform to everybody else's standards. I can guarantee that someone somewhere will find something odd about me. It has got to the stage where I smile on the inside whenever someone tells me I am not following the guidelines set out in their textbooks (especially when it comes to either my sight or my ability to keep wandering around without getting out of puff).
The really nice thing is that I don't feel I have to do anything I don't have the energy for. I must admit that took some getting used to. I gave up going to a couple of things because I couldn't take the stress any more. I spend more time with my own thoughts now - and I am quite content with that.
The only thing I would really like to change is being able to go back to being able to go out for one day after another after another. This has been drastically reduced (especially if my week involves a medical or hospital appointment - Hospitals are very tiring).
Well - I suppose I am still here and that is the main thing. Trust me - there were times when I seriously thought I wouldn't last this long. (Not being able to breathe without being attached to an oxygen supply concentrates the mind somewhat, so does a Cancer diagnosis with no Expiry Date - but you are told you will definitely expire from it. Then being told that your heart has been replaced by an enlarged collander. What really finished me off was being informed exactly how low my heart rate goes at night when I am asleep - If I thought about that I could become extremely scared to go to sleep.)
I will keep taking each day as it comes - that is the only thing I can do. I hope to keep taking you along with me.
|There are three shops which are dangerous for me to walk into - basically because I never manage to walk out of them empty-handed.|
The shops are as follows;-
Waterstones - This Bookworm's favourite shop. Lots of interesting books (other shops which sell books are available). They even provide chairs to sit on as you read - all they need to do is provide drinks and snacks.
Primark - Anyone who knows me will tell you how much I love this shop because of the weird and wonderful bargains you can get in it. It is perfect for me because my idea of torture is going clothes shopping. Seeing as I don't actually mind what I look like (as anyone who has seen me in real life will tell you) I can get bargains that most people wouldn't touch with a bargepole. It is my favourite place for getting very cheap shoes. As someone whose primary mode of transport is a pair of size 6 (or 7 - depending on the style of shoe) feet I don't see the point in paying a lot of money for shoes or boots. Let's face it - I can walk through a pair of shoes costing £60.00 as quickly as I can walk through a pair of boots costing £3.00. The minute Primark start selling those trainers with the lightup rim around the soles in adult size 6 I will be very happy.
However, the most dangerous shop for me to go into is Red5 - an updated version of "The Gadget Shop". This is the ultimate heaven for me. It is a haven of electronic gadgets - as well as some other strange things which don't need a power supply. I currently appear to be addicted to those "Fidget" toys - spinners and things with buttons to press, things to slide, etc. Although I did come out of there with something very useful for getting my revenge on traffic.
Don't worry - this isn't something which can get me into trouble. it is a light which is currently on my bag. The light has a motion-sensor in it so it flashes on and off as the bag moves. This is most useful at night.
I must admit that the strangest thing I ever bought was not a gadget. It was a pair of earrings I bought several years ago from a Dutch shop called "HEMA" - they could have been used as Christmas tree decorations or cookie cutters (they were large hollow star shapes).
Unfortunately, the shop I really used to like having a nose around in closed down a few years ago. A Dutch shop called "Hans Textiel" was a great place to buy clothes with an "interesting" twist to them. I remember buying a shirt which had green and white checks on it (if you remember the "Pacer" chewy sweets - it made me look a bit like the wrapper of one of them).
What is the point of going shopping if you can't have fun whilst you are at it??? Next time you go shopping try to find something unusual.
|Sometimes it is fun being me. Just when you are getting used to medication and monthly implants another lot gets prescribed. Sometimes you even find yourself reading letters which question things you know to be facts.|
Well, the good news is that I have escaped the Chemo so far. The Oncologist took one look at my left breast (and felt under my armpit) and proclaimed herself happy with the improvements. Happy??? I am ecstatic!!!
I admit that I am still not really comfortable with all the medication I have to take – it would have been better if it had all been prescribed at once instead of in dribs and drabs. (At least then I wouldn't have to worry about running out of different tablets at different times.)
When I came out of hospital I was on three different tablets – one in the morning, one in the evening, and one twice a day. I could cope with that. I got a system sorted out pretty quickly.
Then I had my first appointment with the Oncologist who prescribed one more tablet to be taken in the evening (as well as a monthly implant to be implanted by a Medical Professional). The night-time medication pile got slightly bigger.
Then the Cardiologist decided to prescribe me more two more separate tablets to take in the morning.
Finally – last week the Oncologist decided to prescribe me yet another tablet to be taken twice a day, as well as another monthly injection (again to be administered by a Medical Professional).
I think I now have got seven boxes of tablets in my bedroom. Six of them live on my bedside table and one of them lives on the floor because it is too big to fit on the top of the different piles.
The really annoying thing is that one of my tablets actually changed colour shortly after I started taking it (luckily it still smells the same – I call it my “toothpaste” tablet because that is exactly what it smells and tastes like). If you have two white tablets and you know you have to cut one of them in half you had better make absolutely certain you know which tablet you need to cut.
My favourite tablets are the ones I was prescribed most recently – they are chewable. As in – I am supposed to chew them instead of just washing them down with water. They are tasty too – I think the flavour is called “Tutti Fruitti”. They are also the biggest.
If you know me personally you will know that I was scared stiff that the Oncologist would go down the Chemo route even though the Cardiologist didn't recommend it. I didn't want Chemo even before the Cardiologist kindly informed me about my heart apparently having been swapped with a large colander – funnily enough for the same reason as the Cardiologist stated.
The funny thing is that both the Oncologist and the Heart Failure Nurse keep asking me how far I can walk without getting out of breath. Seeing as I don't want to be back in hospital if I can possibly help it I am not exactly going to try that. Not having to lean on lampposts and sit on walls every few steps is good enough for me. Don't get me wrong – I can walk a very long way if I need to. I just don't see the point of going any further than I have to.
One thing I have noticed is I get tired more quickly sometimes – I hate having to pace myself. For example – I can only do one big trip a week now (as in a journey which involves multiple changes of transport or just being out for more than a few hours – eg, a day trip).
It is a good job I love reading – I have been doing a lot of that recently. I am now working my way through a book with a title like “1000 Quotations to inspire you before you die”. It is a very interesting book.
The thing which I am enjoying the most is being able to spend time with my friends – both online and in person. Being able to talk about what is going on in my usual quirky way is keeping me going. If something is going well I will talk about it – if something has happened which has annoyed me I will talk about that too. If I didn't feel like I could share my thoughts with people in any way I don't think I would be very happy. Yes – I am a private person but I will also happily share my thoughts with my friends when I need an “Escape Valve”.
Basically – if I don't feel like doing something it doesn't get done until such a time as I decide I want to do it.
I am going to close this post by saying a big THANK YOU for reading my ramblings and sticking with me. I write because I have to – you read because you want to. I really appreciate you supporting me by taking the time to read my ramblings.
|Today I had the great pleasure of going on a trip back in time, I went to an event which brought back some really nice memories for me. The event was a gathering of former members of a group which I really think should be resurrected - “Citizens' Eye” was a Community Media group in Leicester.|
It also happened to be the first place (apart from “Scribbles”) where I have felt accepted, included, and comfortable enough to take part without being judged and made to feel like an outsider.
I can still remember the warm fuzzy feeling I got when another member of the group (who was at today's gathering) told me they had read my blog and enjoyed it. The best thing was – I don't even remember saying anything to them about my blog in the first place (mainly because I don't remember speaking to the person at all before they mentioned having read my blog).
Being an oddball can be fun – but it can be very challenging at times. Especially when you walk into a group of humans who all seem to be “highbrow” and/or Brainiacs, You may find yourself having to try to “tone yourself down” a bit so you can fit in.
I had no such problems at “Citizens' Eye”. I could be myself and teach whilst learning if I wanted to. In fact, that is part of the reason you are reading some blog posts which may seem a bit unusual sometimes. I have learned not to be so frightened of what people think (admittedly – if you follow me on Facebook you will have noticed that the “fit for public consumption” filter well and truly got lost since the start of my current escapade). I have a story to tell and I am going to tell it in my own way using my own words.
Come to think of it – I think that might be the whole idea behind “Citizen's Journalism”. I am not a qualified Journalist, nor a paid one, but I do try to educate people about some of the challenges I face as well as telling you a bit about other things which interest me.
Yes, I am happiest talking to you from behind a keyboard (I can think better then – and actually type things which, hopefully, make sense).
A few weeks ago I took the guy I am working on my photography project with to my Dad's house so he could take some photographs of the walk from the corner of my Dad's road in the dark (and when I say “in the dark” I mean exactly that). Whilst we were there I took some photographs of what I could see from Dad's house looking back to the main road – I was going to put them on this blog post but they didn't come out as I thought they would (they actually looked better on the small screen of my camera).
Sometimes people's stories lose something when they are “tidied up” by professional journalists. I am absolutely convinced that the best people to write about events which happen are the exact people who they are affected by. It is not about having the right “voice” - it is about having the experience to back up what you are saying.
It is all very well reporting on something in an “if X happens then Y will be the result and we will have to do Z” kind of a way – but what happens if the scenario doesn't play out as expected??? Or even – what happens if you don't realise that “Y” could unexpectedly turn into “Q” for apparently no known reason??? Do you then involve the people who have experience of the situation to help you tell your story better??? I don't mean the people who have been parachuted into the situation to try to sort it out – I mean the people who were there when the situation started and who might be the most useful when it comes to giving you possible outcomes???
Yes – there is a place for “Professional” Journalists but there are some stories which can only be told by the people who are going through the situation (or have been through it) themselves – because the story needs a personal touch which “Professional” Journalists cannot give because they are too worried about “appearances” and neutrality or bias/angle.
Not everybody can tell their own story – nor does everybody want to. However, surely we should be giving those who want to tell their own story the opportunity to do exactly that without sanitising it beyond recognition?
We need to let go of the idea that there is a “good” way and a “bad” way to tell a story – with the “good” way involving people who are paid to report dispassionately on events.
That is what I love about being able to call myself a “Citizen Journalist” - I can tell my story and it is up to you whether or not you choose to listen.
|A couple of weeks ago I had the great pleasure of listening to (and taking part in) a couple of discussions on my favourite subject.|
Before you say “Oh no – now she is going to go on one of her rants about sight, disability, inequality, etc,” and go and find something more exciting to read – stick with me and you may be surprised.
My favourite subject is words and how they can be used, I have GCSE's Grade C and above in (in the order I learned them) English, Dutch, French, and German. The two languages I use the most – even today – are English and Dutch. Give me a book in German and I can just about read it. However, my French is now useless.
The English language is a source of immense fascination for me – I have been known to read books on words, etymology (word origins), and grammar for fun.
Being brought up listening to two languages (sometimes in the same sentence) has given me a slightly odd habit of sometimes taking things literally at first. (A tip – never tell me you are “separated” without telling me that you are separated from your wife, husband, etc. My imagination will submit a response like “you appear to be in one piece to me”.)
On the flip side to that – there are certain words which I have to be very careful about the context of when I hear them. This is because there are certain words which appear in both English and Dutch but have totally different meanings (the spellings can be slightly different but the pronunciation is the same). The major “Trap” for me is that exact word. The English use it when they are talking about an object to catch creatures – the Dutch walk up and down it very frequently (“Trap” is Dutch for “Stairs”).
There is one thing about the English language which I find really frustrating though – and it is not the “I before E except after C” rule either. An excellent example is found in the Oxford English Dictionary. Don't believe me??? Look up the word “Snoop” and read the bit which tells you where the word comes from. It will say “From Dutch – Snoep”. Both pronounced exactly the same but one is nothing like the other when it comes to meaning. An English person accuses me of being a “snoop” and they are accusing me of going through someone's private papers without them knowing. A Dutch person would find it extremely difficult to accuse me of being a “Snoep” unless they had dipped me in chocolate or caramel first (and if you think I am staying long enough for anyone to do that to me you have another think coming) - “Snoep” is candy or sweet in Dutch.
The best bit about language is being able to use it in different ways – ranging from things like “that is the kind of grammar up with which I will not put”, used by Winston Churchill to make a point about people who say you shouldn't end a sentence with a preposition, to my favourite quotation. “Hostilities shall commence on the coastal perimeter” doesn't have quite the same effect as its more famous version of “we shall fight them on the beaches”, does it? The first version was used by Winston Churchill when he was trying to explain why he didn't like something the Americans had written in the Second World War.
The cleverest way of using language is to turn it into sentences which can be read two ways. I don't mean the risque double-entendres – I mean a sentence which is either like the “Four Candles” sketch by the Two Ronnies, or like the tweet I saw earlier about a sheep being seen on the hard shoulder of a motorway - “If EWE (you) see anything please tell us”.
Thanks to a conversation between my Mum and Dad I now have visions of a lot of vehicle exhaust parts in my brain whenever I hear anybody speak (or sing) about “Manifold witness”, At least I now know the difference between “Many-fold” and “Manifold”.
I am going to end this post with a Dutch phrase which is used on leaving someone. “Tot Straks” literally means “until later”. It also happens to be my favourite “Goodbye” phrase.
|I don't know if you remember the old TV gameshow “Blankety Blank”? It was the one where contestants had to give answers which matched the “Celebrity” Panellists in order to score points and win a “Blankety Blank checquebook and (useless) pen”.|
What reminded me of that gameshow was a couple of things which happened recently – and they both had the same result. The result was a very pleasantly surprised and seriously confused Ineke (not to mention a slightly embarrassed Ineke as well).
I have never thought of myself as “conventionally clever” - second thoughts – I have never thought of myself as “conventional” full stop. Or “clever” for that matter.
In fact, if you and I were to write separate lists under the heading of “Ineke Is...” and compare them I very much doubt that the lists would match up.
Well – OK – there are certain things which we would agree on (only because they are blazingly obvious);
I am Human (although I sometimes seriously wonder about that).
I am of the Female Species (although I have been called “Sir” a few times).
This next bit is purely my opinion about myself (feel free to disagree with everything you read from now on in this blog post).
I am (at least) Half-Dutch. Not only due to the fact that I have one Dutch parent and one English parent – I also have a Dutch first name. I identify more easily as Dutch than English.
I am seriously shortsighted (to the point of being Registered Partially Sighted).
I am unconventional.
I am smart but no way would I call myself “clever” (especially when you read my list of qualifications). My “cleverness” cannot be measured in conventional ways.
I am good at hiding in plain sight. Well, I get that general idea from speaking to some of you who have read Inkyworld and been amazed by the challenges I face due to my sight. It is quite funny when people tell me that they didn't realise my sight is so bad (the clues have always been there – you just have to watch me carefully).
I am someone who loves learning – I just have a major allergy to classrooms and teachers.
I am good at “Sideways thinking” - to the point where my brain starts to hurt if it is forced to attempt to think in the same ways as most other people for very long.
I am a Bookworm. There is only one thing I love more than reading – and that is writing.
I am creative with a very vivid imagination.
I am a lover of words, language, dialects, and accents.
I am happiest either on my own or in a one-to-one situation (or in a very small group with people I know and trust).
I am a thinker who is comfortable spending time with their own thoughts.
I am prone to bouts of thinking my only use is as a Lab rat for other people to experiment on.
Remember I said I am smart but I wouldn't call myself clever??? There is a very good reason for that. If you measure my knowledge in “paper” qualifications you would come to the conclusion that I am not very educated (four GCSE's at C Grade or above and a handful of certificates). If you look at me you might not think I am the cleverest creature on the planet (unless you are one of those brilliant humans who sees glasses as a sign of intelligence). However, if you measure my knowledge in whether or not I can hold my own in a conversation with a Brainiac you may be surprised. The best way to measure my knowledge is to watch me in my day to day life (or read my blog) as I cope with challenges that you don't need to pay attention to – as well as doing things which have a rather fascinating habit of amazing people because they don't expect me to be able to do them.
Yesterday someone paid me a very unexpected compliment when they said that my blog is interesting and that they had learned things through reading it. Julian Harrison (yes – you are correct – he has been mentioned on this blog before) is one of my favourite Educators because he serves his education in easy, non-threatening, bite-sized chunks. These chunks are called “conversations” - and they give my brain a really good workout. He could make both of his areas of expertise seem really threatening (they are Mental Health – which he has got both professional and personal experience of - and the Holocaust – which he hasn't got direct personal experience of but he is an encyclopedia on that subject) but he is open and honest enough to make me feel very comfortable being educated by him.
When I thanked Julian for his compliment he said “the day we stop learning from other people is the day we cease to be human”.
I am never going to feel very comfortable blowing my own trumpet. I always think I could be better at things. However, there is one thing I will admit to being good at – being me.
I was going to finish by quoting some lyrics from either “The One And Only” by Chesney Hawkes, or “Last Man Standing” by Bon Jovi. However, I have decided to quote you some lyrics from the song which inspired the name of the “Being Me” section of this blog -
“Cause I'm being me. Before the night is over you'll be here. But you won't see - no you won't see - what you've got here. You've got me”. (From “Being Me” by Plaeto)
Quite what you make of me is entirely up to you.
|I have been told off by two friends of mine on Facebook. Well, I suppose they did kind of have a point. You see – I had put their names (among others) on a list of humans who inspired me and made the world a better place. Before you say anything – they were not complaining that their names had been put on the list – they were complaining that mine hadn't.|
When I pointed out that my name didn't belong on that list (after all – I cannot be inspired by myself) they still didn't like it very much.
This got me thinking – how do we decide who and what inspires us???
Obviously, we can be inspired by a “celebrity”, or a historical “World figure”, or a certain book or song. We can also be inspired by our friends and family, or even our religious beliefs (if we have any).
Most of the people who have inspired me are known to me personally (some of them have even been mentioned in this blog before now).
Just out of interest – I found something on Facebook which said “you can only have 5 things – what are they?” - I didn't have to think very hard about the first item because I can still remember the first time I saw it (and was allowed to touch it).
If they were asked to name something they find inspirational - most people would (if they actually like reading) would probably name a book by one of the great Classic authors, or a biography of some historical figure??? Some people would even name the Holy manuscripts from their religion???
Not me! My most inspirational book is a slightly obscure one which is out of print now. You may be surprised to learn it is written in the English language. It is a children's Science Fiction book. You could say that it is partially responsible for the existence of “Inkyworld” - if I had not either met the author or been able to get my paws on the book when I did, the chances are you would not be reading this now.
I can still remember when I first saw a copy of “Spellbinder” by Stephen Bowkett. It wasn't so much the book itself which was the inspirational thing – it was the fact that (to me at least) it showed you could actually get paid to daydream on paper. What made it even better was I knew the author. (The fact that the author was just about the only member of his “real” profession who I didn't fantasise about skewering with a window opening pole and barbecuing over the Bunsen Burners in the Science classrooms at that school was an added bonus. Did I ever tell you I have a vivid – and sometimes seriously twisted – imagination???)
There is something which I always find intriguing. People can find other people inspiring for the strangest of reasons. These can range from rescuing people from certain death in situations like War, and natural disasters, to being able to sing brilliantly, to not giving up in difficult circumstances, to – what I see as – just living their life in the only way they know how to.
I said at the beginning of this post that I don't find myself inspirational. In fact, if you were to ask me for a list of “Inspirational People” - and forced me to put my name on it – you would be reading a very long list of names before you saw mine, right at the bottom, where it belongs.
You know something? It feels very strange to be told that I am an “Inspirational Person” myself. I haven't done anything remotely remarkable – unless you count existing??? I can think of people who are braver than I would ever be, who are better at writing than I will ever by (and one of them has been mentioned in this blog post), who are a lot cleverer than me (and not just because I can list Brainiacs with PhDs in various subjects amongst my friends), who are better at being friends than I will ever be. Basically, I am just me – muddling my way through life as best I can.
If you asked me to list my “Unique Selling Points” my list might surprise you.
My favourite “skill” is my ability to think sideways. To me – the only time when “one plus one makes two” is when you are doing maths. Let's just say that I am the one most likely to come up with an idea that people will think is too crazy for words but which might actually give the results they are looking for.
I have been told that I make a good “Sounding Board”. One thing I do know is that I refuse to judge other people until I have experienced them for myself. Don't expect to be judged on what you say to me – you will be judged on how you treat me.
On the flip side of that I love finding out how people and things work. The way to find out if I am interested in you for any reason is to wait for questions. The more questions I ask you the more interested I am (the same goes for the more “sideways” questions I ask you).
I can be a fountain of seemingly useless information (my favourite fact that I learned recently is about Iran getting its modern name as a result of the Nazis deciding that it was the base of the “Aryan” race – the original name of Iran was along the same lines as “Aryania”).
I will always stand up for people who are marginalised. After all, I know what it feels like to be bullied, to be Disabled, and to feel totally alone and misunderstood.
However, my favourite “Unique Selling Point” is that I am nothing special – I know how hard I have had to work to get where I am now and I know I have got a lot further to go before I can join the “Hallelujah Ineke” Club.
The irony is that my school reports almost all said that I “could do better” and I “must try harder”. The truth is – I have always felt like I had to work at least a hundred times harder than everybody else just to be the same as them. This means that I feel very uncomfortable when people start praising me for doing what (now) comes naturally to me. To be perfectly honest – when people start telling me that they think I am inspirational to them I start getting seriously worried because – in my experience – praise usually comes closely followed by a “but if you....”.
Yes – I am tough. Yes – people tell me I am good at writing (mostly humans who are way better at writing than me). Yes – I will do anything for my friends. Yes – I continue to show courage through adversity.
Does any of the above make me “Inspirational”??? Not in my eyes – it makes me human.
If you want to think I am “Inspirational” feel free to do so – just don't tell me. On second thoughts – if you insist on telling me try showing me instead.
|As someone who was put through the Mainstream Education system as a “Special Educational Needs” student from the late 1970’s to 1990, I wanted to find out what life is like for the people who have to teach people like me (the teachers).|
After I had left school one of my former teachers told me the staff used to have meetings about what to do about me (it might have helped if they had invited the one person who could have helped them – ie, me). This was a long time ago and I don’t have any memories of such meetings (though of course they may have happened). Nor do I recall being given any special instructions or equipment, if such existed, for helping you, given that you were in a mainstream class. Absolutely you should have been invited to such meetings, and / or there could have been discussion groups where pupils and staff could openly air their concerns.
This inspired me to write the poem below;
I don't understand.
I know I'm not very good,
But I didn't think I was this bad.
My head's so stretched,
I just can't cope.
Feels like someone's.
Put my brain on overload.
I don't know why,
Everyone's going on at me.
Where's the door,
To 'Escape Capsule 3'?
You think I'm living,
In a daydream more often than not.
Dear Sir, to stop me doing that,
Would turn my life support machine OFF!
You say I could do better?
Well, I couldn't feel much worse.
It wouldn't surprise me,
If I left school in a hearse.
Don't get me wrong,
I know you're not to blame.
I want to ask for your help,
But the other kids would still call me names.
Now do you understand?
I never was very good.
But I wasn't really that bad!
I asked my favourite teacher from my days in Secondary school if he would be prepared to collaborate on this blog post and discuss “Teaching and Sight Problems” with me. Luckily he agreed.
Steve Bowkett was an English teacher when I first met him in 1985. He has also written several books – and a poem!
Hi Steve – thanks for agreeing to do this.
My overriding emotion when I look back on my time at Secondary school is one of overwhelming loneliness. I felt like I was the only person in the school who had difficulties. From what I can remember – nearly all my teachers appeared to be “normal-sighted”. I would have loved to have one teacher who had some kind of disability so I could see how they coped. It would also have made me feel less outnumbered.
My first question is – do you think it would help if teachers had practical experience of sight problems (and other disabilities) either as a result of being disabled themselves or attending courses where they were given a chance to experience exactly what it is like? I think there are issues around recruiting disabled teachers specifically because of their ‘practical’ experience of disability. They may or may not be good teachers and their disability might not give them insights into some pupils’ problems. Also, if for example a sight-impaired teacher were employed hopefully to put his / her experience into practice, would teachers with other disabilities need to be employed to bring their own insights into school policy? I would also have concerns that teachers with disability may have difficulties with some pupils who don’t understand what they’re going through (which is a nice way of saying, some kids would play up!)
I take the point about loneliness and frustration etc, and would certainly advocate disabled people being involved in talking with teachers on courses, through INSET sessions, YouTube interviews etc.
My second question kind of leads on from that. I don’t know what it is like in schools nowadays but – speaking personally – would you (as a teacher) be prepared to sit down with a student and listen to them when they told you about the difficulties they had in accessing your methods of teaching? (In fact, most of the time, you were the one teacher I found easiest to cope with. There were two other teachers whose lessons I came to dread because, not only did their teaching methods make my brain hurt but their general demeanor indicated they would not have welcomed me asking for the kind of help I needed.) Personally I would always be prepared to sit down with a student to discuss issues around their disability. Some schools nowadays probably build such dialogue into their ethos and policies. Practically, I think teachers are more pressured now than ever because schools are still sausage-making machines and, alas, seem to be run on a corporate/business model where results are all. This means that time is at a premium for most staff – though of course accommodating people with special needs would improve their educational experience and lead to better results.
You’ll appreciate that I go into schools nowadays under specific circumstances, as an author, so only get a snapshot of what any school is like. As always, there are good and not so good schools. Quite often I’m told beforehand that a child in a class is autistic, hearing-impaired, etc, and my impression is that many schools are much more aware of pupils with special needs these days than 30-40 years ago (can it be so long?). There is also more advanced technology available now that potentially can help – I’m thinking of sight-impaired pupils having access to visualisers, laptops, etc, and other devices that you probably know much more about than I do.
Being a “Special Educational Needs” student has a habit of inviting a different type of bullying than other students might be subjected to (even to the point where the student can feel like the teachers are joining in). This very quickly led me to the point of not even trusting most of the teachers. I can remember being shouted at by one teacher as a result of something which had happened – when I told them why I had done it (I told them straight out that I wanted to move to the secondary school in the village I lived in) I was left feeling patronised by their reaction.
If only I had had a teacher who I could have used as a go-between before things got to that stage. There was a (in my opinion top-heavy) pastoral regime at the school where I taught you, so potentially a support structure was in place. This does not mean that any given pupil would ‘get on with’ and feel supported by particular teachers. Another problem in my experience was that once ‘Baker days’ and the 1265 hours diktat were imposed on schools, meetings were called for the sake of being seen to be filling the time. I remember spending several hours as part of a ‘working group’ discussing some topic or other – I don’t remember if it was around the issue of disabilities – and our recommendations, which would require time and money, were ignored. On challenging this we were told by the deputy head that ‘the need had been identified’: beyond that, nothing ever happened. I suspect similar scenarios occur in some schools today. I would have loved to be able to sit with one of you teachers and tell you how I felt and how best to make my life easier. In some cases it would have been a case of making some minor changes to teaching methods, or the layout of a classroom, in other cases it would have involved asking someone to wear a jumper or a (different) coloured shirt. (White shirts and bright lights are a torturous combination when your eyes are sensitive to bright lights.) I would never have objected to you asking me to wear certain coloured shirts, etc, if it helped you to get on in class, though I appreciate that there were some teachers you would never have approached about this!
Would you agree that it would be a good idea for a teacher who a student obviously likes (or trusts) to be a go-between when it comes to telling other teachers about any problems the student has? (And does such a thing actually exist nowadays?) Even back then (when the world and I were young), form tutors, year heads, etc, were supposed to do that as part of their role. Of course, any given pupil might not like or trust their form tutor or year head, in which case the system falls down. Ideally it would be a good idea if a teacher that a pupil gets on with felt able to and comfortable with passing on that pupil’s concerns to colleagues. Practically speaking it depends upon how well staff get on with each other and whether that teacher would himself/herself feel comfortable talking to other colleagues about such matters. As I’ve suggested in my responses above, such a system probably exists in some schools but not others.
In your own case, in light of the occasions when teachers didn’t understand you or shouted at you, it would have been difficult for me to confront them directly if personally I didn’t like, trust or respect them – and frankly that included several members of staff! I would of course have highlighted issues to head of year or form tutor on an ‘official’ basis, but my own gut feeling is that support structures work best in schools where the people ‘gel’, where colleagues get on with each other and where such matters can be discussed informally as well as in a more formal way.
Do you have any other comments to add to this?
Really, to sum up, then and now there are good schools and poor schools in terms of addressing the particular needs of some pupils. I think schools generally are more aware of such pupils, partly because more research has been done in various areas of behaviour (ADHD, autism etc), and better technology exists now to support a range of special needs.
Frankly Ineke, I think our school was not brilliant in helping pupils like yourself. There were some intolerant / ignorant teachers there at the time, a few of whom you were unfortunate to encounter. I am pleased that you feel I was not one of those and that you could then and can now count on me to lend a sympathetic and hopefully understanding ear.
May your blog go viral!
By the way - in case you are wondering - the reference to "Escape Capsule 3" in the poem was about the classroom where Steve taught me English in my first year at Secondary School (E3).
This is probably going to be a slightly strange blog post (and it could be a bit difficult for some of you to read). I am going to mix in some stuff about things which have been happening to me recently – as well as trying to explain my attitude towards my current escapade (and if you think you have read what is about to follow before on Facebook I would suggest you keep reading anyway because you may be surprised).
I have always been fascinated by people who come with a slight “twist” - you know – that one thing which sets them apart from the rest of the population. I just seem to gravitate towards them and feel more comfortable with them more quickly than the “normal” run-of-the-mill people in Society.
What fascinates me the most about them is how on Earth they ended up in my orbit – more to the point – why they ended up there. I believe every human can teach us something (we might not know what it is immediately).
I can remember two conversations I had with two different humans of the Male Species on the subject of their lives. One was an ex-Heroin Addict (he was the kindest man I have ever met) and the other one introduced himself to me as “Hi, I'm Andy, I have Depression, Psychosis, and I have attempted suicide”.
Seeing as neither human had done anything to harm me I was comfortable in their presence – and I would never judge someone on their past anyway. What matters to me is – are you likely to damage me in any way??? If I think the answer is “yes” I will remove myself from your presence rather more rapidly than you might expect.
People's minds and attitudes are a constant source of amazement to me. I love reading books where the reasons behind things are explained. I also love reading about how different circumstances can affect different people in different ways.
For example I have recently read a book called “Confessions of a Sociopath” which was written by a non-Criminal Sociopath. In a funny way it actually went some way towards explaining my attitude towards the challenges I face. Before you start to worry – I had better tell you that (according to the checklist in the book) I am not a Sociopath. However, I could see similarities between how the Author manages to disconnect him or herself from situations and people which are no longer beneficial to them and how I have always treated any challenges I face.
I prefer dealing with problems on my own, in my own way, and in my own time. I may appear to have the strangest way of going about it at times (as well as a tendency to turn a really terrible situation into a joke as often as I can) but that is just me. I operate on the principle that – as long as I manage to achieve my objective and nobody gets damaged along the way – it is going to be OK.
There is one thing I need in order to be able to do this. I need a reliable source of information I can trust. If I am reliant on humans to help me I need to be able to feel like I can treat them in the same way as I treat my friends as much as possible. Ask seemingly stupid questions, make jokes, etc.
One thing I have an absolute hatred of is those people who act like they are the great “I AM”. As in those people who think they should be obeyed no questions asked. Let me ask questions and I will be able to cooperate with you – answer my question with “Because I said so” and all bets are off – especially if my life is involved.
Before I continue I want to share something which might help you understand some things I am about to discuss.
You could say that Cancer is not exactly a stranger to my family. In fact, I feel sorry for my Dad – his Dad, Mum, Mother-in-law, and wife all had it in one form or another. In fact, the only one of those four who didn't actually die of Cancer was my Dad's Mum.
My Mum was the scenario which passed through my mind when Glenfield Hospital decided to set the Palliative Care Nurses on to me. She was told in January 2007 that she had terminal cancer and by mid February 2007 she had died. Now, Glenfield were not to know about my Mum in advance of my diagnosis but not immediately giving me an “Expiry Date” or a “Best Before” date was worse than the diagnosis itself. It wasn't until my first appointment with the Oncologist that I found out I have three to four years on this planet (ironically – because nobody told me before that appointment I was actually under the impression I would be dead before I got to see an Oncologist of any description – it took nearly a month to see her).
If you have ever met my Mum you will know we are similar in lots of ways – we will both make sure you are happy before concentrating on ourselves. We will also make light of any serious situation we find ourselves in. Cancer diagnosis??? Heart Failure Diagnosis??? Only a minor inconvenience – nothing serious to worry about.
(The funny thing about it is if you were to look at my scans – and read the letter from my Cardiologist to the Oncologist – I shouldn't be able to move. However, to watch me you probably would think “why is she lying about having Heart Failure??? She is wandering around perfectly OK!!!”)
To be perfectly honest – I am treating the Heart Failure and the Cancer in exactly the same way as I treat my sight. Unless they cause me problems (or I am being viewed by Medical Professionals or taking my tablets) they are minor inconveniences to me.
I have always had that attitude towards my sight anyway – it is everybody else who has got the problem not me. After all, I know my own limits – other people don't unless they have seen me in action (and most of the time they won't realise how bad my sight really is. I have been shocked by the amount of my friends who have read my blog and had not previously had the faintest idea how bad my sight really is – I apparently move among you undetected).
My favourite comment was something someone said to me in person. Their husband had read one of my Facebook statuses out to them and had obviously decided I had lost the plot. This was after my most recent MRI scan. It is not my fault that the husband in question plays drums in church – it is not even my fault that that was the first thing which came into my head when I was in the scanner and all I could hear in the righthand side of my head was someone playing on a drumkit. Put two and two together and you come out with the husband playing drums in my head (or at least I did).
Don't worry – my mind can throw up all kinds of apparently illogical logic. “Only Connect” is too easy when it comes to some of the connections my brain makes between apparently random things.
Being able to make a joke out of my situation has actually made it easier for me to deal with. If I couldn't joke about feeling like a bus (“Power System Pressures OK”) or “Jump-lead tests” (also known as ECGs) I would be seriously depressed. I especially love it when other people accidentally tune in to my sense of humour – like when I went to see the Heart Failure Nurse.
Somehow the words “Heart Failure Nurse” turned into “Heat Failure Nurse” when they got on to the Church Notice Sheet. My Facebook status on Tuesday morning played on that with absolute delight. “I am a bit confused as to where I should be going this afternoon – the calendar on my mobile phone says I have got an appointment with a Heart Faliure Nurse but the notice sheet at Sutton appears to suggest my appointment should be with an Engineer. Apparently there is such a thing as a “Heat Failure Nurse”??? I know I make jokes about feeling like a bus and jump-lead tests but I am a HUMAN. If my personal (built in) heating system packs up I would expect to find myself in a hospital not a garage or a vehicle servicing centre”.
I am just wondering what the 24 hour tape test will bring next week. More fun I hope.
Oh – before I go – I found out today that I have been awarded the Enhanced Rate for Personal Care and Mobility for my Personal Independence Payments (PIP). It should be in my Bank on the 18th of September. Thank you for your prayers and positive thoughts.
|You could say I have been learning a lot about “Perspective” recently. Both in the Photography sense and the “Life” sense.|
Threaded through this blog post you will see some photographs by my favourite photographer – Derek Lee – which might give you a sense of how I am currently feeling about everything which has happened recently. (My world seems to have been tilted at a very strange angle.)
Where were we when I updated you last time??? Ah – yes – I remember now. I was the subject of an argument between two Doctors (GP and Oncologist) about an implant – and I was waiting for an appointment to see a Cardiologist, wasn't I???
Well, first the good news – my medication is now up-to-date. The implant was implanted last Wednesday and they have got the next one scheduled already.
I saw the Cardiologist last Monday. That was an interesting event. Dr Chin was very kind and respectful.
The strange thing was that when I was subjected to a Jump-lead Test (aka ECG) I was not offered a chaperone even though the human sticking the wires on me was a human of the male species – yet when the Cardiologist wanted to listen to my heart I was offered a chaperone (which one do you think might have involved me being topless???).
Anyway – Dr Chin (Cardiologist) scared me to death when he told me about the function of my heart - severely compromised – and the amount of leaks it has got in it (let's just say I think someone has taken my heart out and replaced it with a colander).
He did one thing which I was under the impression that would not be done due to my heart – he prescribed Beta-Blockers (reluctantly). He also prescribed another drug which ended up making me smile when I came to collect the prescription. More about that in a bit.
I was informed that he would not recommend Chemotherapy or Herceptin for me due to the fact I haven't got any reserve in my heart.
He also told me he wanted me to have both an MRI Scan and a 24hr Tape Test.
When I went to collect the prescription I was surprised to be shown two boxes (one box for each medicine) and a pill cutter. These were issued with the words “you will need to take half a tablet every morning – here is the cutter to cut them”. I had visions of having to explain myself to the Police as I was absolutely convinced that cutting your own drugs is illegal???
Anyway – that was Monday done and dusted.
On Tuesday I had an appointment with my new Heart Failure Nurse. She is very nice – she even explained things to me in a way that I could understand. (However, I am still trying to work out whether it is a very good idea to antagonise a poorly and malfunctioning heart – apparently one of the drugs I am now on is part of a group of drugs called “MRA” (the “A” stands for “Antagoniser”).
I have already told you about Wednesday.
Thursday was a blank day (I met up with a friend of mine and gave my ears a treat by letting them listen to an interesting accent which wasn't trying to give me Medical information).
Friday was a busy day. I started by going to the Social Media Cafe (my usual Friday haunt). Then I came back home for a meeting with the person I am working on my photography project with. After that I had a catchup appointment at my GP.
At my last appointment my GP had decided to try to do me a favour by telling me about a form he wanted to fill in on my behalf. I agreed to him doing this. On Friday he gave me said form and gave me a number to ring about it. Speaking to the DWP is soul-destroying at the best of times – Friday's conversations with them just made me lose the will to live.
I will keep the explanation as brief as possible – however, you will probably still end up getting confused.
I am currently on Disabled Living Allowance (DLA) because of my sight. The form the GP gave me was a special form so I could claim money due to my diagnosis. This meant I had to start from scratch as DLA is now being replaced by Personal Independence Payments (PIP).
Now – I had told every single being I spoke to at the DWP that I had this form. Half of them still asked me if I had only been given six months to live (no). Eventually I spoke to a very nice lady who obviously knew what she was doing because she talked me through the process and gave me an address to send the form to. I am now waiting to hear back.
Saturday I went to a wedding.
Sunday was Church then lunch with my Dad.
I was hoping to go into Leicester on Monday but it was too hot for me to get much further than the COOP near me before I decided to give up and come home.
Tuesday started off boring and then things livened up on my way to my Dad's house. I got a very strange voicemail message telling me I had to book an urgent appointment – no information regarding where and what for. I rang the number I was given and found myself agreeing to an MRI Scan this coming Tuesday. Had dinner with my Dad (which I cooked) and he gave me a lift home,
Yesterday I had a lovely morning with another of my friends.
This evening I am considering going to the Junkfood Project for my dinner but I will see how I feel.
This morning I received confirmation of both the MRI Scan appointment and the 24hr Tape Test appointments (Tape Test Monitor will be fitted on 21 September. I am now apparently in the sights of all three major hospitals in Leicester - Leicester Royal Infirmary for Oncologist, Glenfield Hospital for Cardiologist and (this is the strange one) Leicester General Hospital for the Tape Test.
I will keep you posted.
|Every so often people say things which start blog posts cooking in my brain, then other people will unknowingly add ingredients to the melting pot which end up making me feel glad that I waited with writing the blog post.|
The subject for this blog post is one such occurrence.
The idea came as I was sitting in Church on Sunday morning listening to Mathew Sheffield preach. It was one of those occasions when my brain wouldn't quite cooperate with what I was supposed to be doing (listening to the sermon with no distractions) and started shouting at me “BLOG POST ALERT – BLOG POST ALERT”. Before you think this is going to be a rehash of his sermon – well – it kind of is but with all known religious content removed.
As you know I am involved in an escapade which involves being viewed by various Medical Professionals and having all sorts of opinions thrown at me (although – come to think of it – nobody has said outright that my actions have caused the situation I am in).
The main thread of the sermon (as far as this blog post is concerned anyway) involved one poor guy in the Bible losing everything and ending up being abandoned by his three friends. They abandoned him after each one gave their opinion on the situation and the best way to put the situation right.
One of them told him that he must have done something to cause his illness (as well as losing everything he also had some kind of illness) and all he had to do to recover was to find out what he had done and attempt to correct it (sounds a bit like Glenn Hoddle's comments about Disabled people having done something bad in a former life).
The second one wasn't much more use – this one just fired off advice about what to do without listening to a word the man said.
The third one just made it all about them – a kind of “How do you think I feel?” scenario.
(I actually didn't mind Mat singling me out during his sermon when he asked me whether I would punch a Doctor who did option 2. The answer is – I have been more tempted to carry out that course of action than may actually be healthy for me – and not just on Medical Professionals.)
So – I had a blog post cooking in my brain. It was too hot for me to do very much at all on Monday. This meant blogging had to wait.
Then my attention was caught by a thread on Twitter by Nathan Constable on the subject of “Leadership and Motivational Posters”. (Well, to be honest, it was more about Leadership than the posters.)
When Nathan writes I feel compelled to read his output – he writes a lot of sense in a very easy to understand format.
One of his tweets said “If you don't understand yourself I think it is very hard to lead others”.
This is something most people appear to miss completely. I am talking about just about every human I have ever met who has had some kind of “Authority” over me. If you ask me the main thing they forgot was that they were likely to be subject to human error precisely because they were in fact human themselves. Also, them being human means that they are individuals with individual needs, desires, abilities, thought processes, etc. It is strange how that last sentence also applies to me, isn't it???
This brings me on to Nathan's next standout Tweet - “But the one thing I took from all of this is there is no one single all-purpose one-size-fits-all method of leading”. Wow – this is a guy who I would have no problem working for – sorry – with.
If you have ever met me you will know that I can best be described as a “Quirky Oddball” with what you might call a very strong allergy to conforming to other people's ideas about me. Some of this allergy is due to my sight, some of it is due to me being half-Dutch (have you ever tried to order a Dutch person around against their wishes??? This has a nasty habit of ending badly if you have not had previous experience.).
I am Ineke Caroline Poultney – I am an individual – therefore, the best way of getting me to cooperate with your wishes is to treat me as said individual. This involves simple things like talking to me instead of at me, listening when I say I cannot do something exactly in the way you want it done, giving me all the necessary information regarding what is happening and what you expect to happen (and be prepared for me to confuse you in some way – particularly if you happen to be a Medical Professional). Most of all – throw out all known textbooks which you think might give you a clue as to how best to deal with me. They don't have a chapter on me.
What I am trying to say in my usual “Inky-style” is – trying to force anybody (not just me) to conform with your preconceived ideas will just lead to trouble. This may sound unbelievable but even I have to guard against judging people by what I think I know about them.
We all need to pay attention to our thoughts and actions regarding other people.
The best thing to do would be “Treat Others In The Same Way As You Would Want Them To Treat You”.
|Dear Reader (Sorry - Dear Friend)|
I know this may seem a little unusual – me writing a letter to you instead of my usual ramblings on here. There is a reason for that though.
If I could I would write to each and every one of you individually but I haven't got any other way of contacting some of you than through this blog – so please consider this as a personal letter from me to you.
I just wanted to say a big THANK YOU from the bottom of my heart for your support. As someone who exists for the purpose of writing I am always amazed when people actually like what I write – no matter if it is on here or on Social Media. I write because I have to in order to be happy and (reasonably) healthy – you don't have to take the time out of your life to read my ramblings. As the lyrics from “Get The Funk Out” by Extreme say - “We won't try to force feed you.”. (And you know where the back button is on whatever device you read my ramblings on.)
Seriously though – as I sit at this keyboard I am honoured that you seem interested in my thoughts (scrambled as they are sometimes).
For those of you who don't know the story behind this blog – it started out as a head-emptying exercise after I had been made redundant in 2009 (wow – is it really that long ago???). I just started it because I had seen some things I wanted to comment on. Then I learned that humans actually read my ramblings and liked them – because they took the time to tell me they did.
I remember the first time I was told that people were actually reading my blog. The conversation went something like this;
“You are a good writer.”
“Thank you.” - wondering how the other person could have come to that conclusion.
“I read your review of Kristyna's gig and it was excellent”.
(Me thinking – you what??? How did you find it???)
A few days later the Kristyna in question told me herself that she liked the review as well.
I am not sure how I manage use words to convey feelings, atmosphere, and meanings in what I write. I just switch on my laptop and type the first thing which comes into my brain.
Come to think of it – that is not exactly true. I can credit some wonderful people with helping me learn how to write the way I do. Or – more to the point – helping me to learn how to feel comfortable with the way I write.
If you have spoken to me in person you will know that I write as I speak. A couple of you have actually scared me slightly by saying you can actually hear me speaking the blog posts as you read them - and I thought I was the one with the vivid imagination??? All I can say is – it is a good job you cannot (as far as I am aware) read my thoughts as I type my ramblings sometimes as you might learn some very “interesting” Dutch. As in swearwords.
If you have read this blog before you will know about my health issues – sometimes I may not have the mental energy to blog (even though my brain keeps throwing ideas out all the time). So if you find big time gaps between blog posts that is probably why. (You never know – one of these days I might work out how to work it so I can blog from my mobile phone. I wouldn't hold my breath if I were you though – you may find yourself in need of an ambulance or a funeral director if you do.)
Speaking of my health – thank you for your kind wishes, offers of help, etc. They are very much appreciated.
Trust me – there are occasions when I feel like stopping the blog and the Social Media, crawling into a corner and giving up. Hearing unexpected humans saying they enjoy my blog and the rest of my ramblings elsewhere is what keeps me going – both writing-wise and living-wise.
I think I have rambled at you for long enough – and I am in danger of getting soppy as well (this is not a good idea) – so I will close with how I always finish my personal emails;
Have a BIG HUG
|Every so often I end up reading books and blog posts on subjects which – to most of the general population – are not remotely connected and I can still come up with a connection between them which is not necessarily apparent.|
A recent case in point is my recent reading material – a book on Policing by John Sutherland, a book on Geography by Tim Marshall, and a blog on Mental Health law by Michael Brown.
On the face of the list above you might not see much of a connection. When I tell you that “Blue” (the book written by John Sutherland) and “Mental Health Cop” (the blog written by Michael Brown) are both written by serving Police Officers, you might start seeing a connection. If I tell you that the above-mentioned book and blog both touch on Policing and Mental Health (from very different angles) you might see more of a connection.
But what has a book about Geography got in common with both of them??? Well, the title of Tim Marshall's book “Prisoners of Geography: Ten Maps That Tell You Everything You Need To Know About Global Politics” does mention both Prisoners and Politics. So that might be the connection???
Sorry – it is a connection but not the one I immediately found. I suppose you would have to (a) read Tim Marshall's book, and/or (b) learn how to think sideways. (You have certainly come to the right blog for lessons in option (b), haven't you?).
The word that jumped out at me from the title of Tim Marshall's book wasn't “Prisoners” or “Politics” but “Maps”.
Not only do maps show you routes from A to B but the really good ones show you all the obstacles you may face (if you want to know a very interesting fact about India and China and why they have never invaded each other – read “Prisoners of Geography”).
John Sutherland's book reads like a map of his career in Policing (and his battle with Mental Health difficulties), Michael Brown's blog reads like an attempt at explaining the “maps” involved in deciding what course of action should be taken by which group of people when it comes to suspects with suspected Mental Health issues (as well as those dealing with such people).
Not only can maps be useful but they can also become a hindrance if you don't know how to read one, you start off heading in the wrong direction, or you follow the map as rigidly as some people follow their SatNav.
I think I might know what is going through your mind now. But Inky – laws are there to be followed and you will end up in serious trouble if you don't obey them.
That is true – in more ways than one. However, there are also laws that contain so many loopholes they are not much use anyway. Also, there are situations which are not actually covered by laws (usually because nobody has dreamt up a law to cover a situation which has never arisen before).
Here is a thought – what would happen if we made maps of people instead of geographical occurrences??? As in – what would happen if we made maps of people's abilities, needs, desires, etc???
I know I am in danger of straying into territory best suited to humans with some kind of qualification in Psychology, Psychiatry, or General Medicine here (and anybody with those qualifications can feel free to argue with what I am about to say next) but I have been thinking about this quite a bit - even before my current escapade started.
People seem to have some wonderful ideas about me (and I am not exactly using “wonderful” in its usual happy sense). They either seem to try to put barriers around me or they are amazed when I seem to act like everybody else. “Oh – poor Ineke. She won't be able to do such and such.”. Guess what guys – if there is something that Ineke really wants to do she will find a way of getting it done by any means within her power. She has been known to do nearly everything you can. Admittedly she has paid the price for it afterwards sometimes but – trust me – it was worth it. There are certain things which cost me a little more in mental and physical energy than most people (going to a cinema, going to strange places at night, etc) but even having to psyche myself up beforehand doesn't usually stop me if I really want to do it.
On the flip side of that we get the line I am getting nauseated and fatigued by when well-meaning humans say it - “You are so brave”. Trust me – this has been uttered in my direction more times that I can remember. Admittedly, some of the occasions when it was used were ones when I actually felt like I had achieved a goal by doing whatever it was which prompted the comment. Others (like me going on a train to Glasgow by myself) were not what I would call appropriate instances.
My personal background means that I am used to having to “Keep Calm And Carry On” when I don't want to. It also means that it is second nature to pick myself up and dust myself off when I run into difficulties (and it also makes me very uncomfortable with the idea of asking for help or making a fuss when I find myself unable to do either of those for whatever reason).
There is something strange which I have noticed about myself recently. I get more energy when I am allowed to be myself. There are certain humans who I love spending time with for that exact reason – I can say what I want and do what I want in their presence and they don't make me feel like an Alien. Feeling like I am being boxed in and I have to watch what I say and do just upsets me. I may appear to be the loudest, most blunt human you have ever come across or I may appear to be the one who is the most comfortable when merged with the local scenery – they are both me. In my “natural” state I am actually very quiet and prefer either my own company or just being with a very small group of humans who I trust.
I want to finish with something which amused me on Twitter. One of the Twittercops I follow decided to do a survey about whether or not people should stereotype others. As I said in my Direct Message to the Twittercop - “Good grief – anybody who tries to put me in a stereotype box soon finds out I am unique”.
|It feels like a long time since I have written any blog posts on here (and I do apologise for my silence).|
What can I say??? This being properly poorly escapade is really taking some getting used to. This is probably because – although I have official documentation on NHS letterheads that state I am seriously ill (to the point of it being not exactly life-extending) - most of the time I don't actually feel as though there is anything wrong with me.
OK – so I seriously considered calling an ambulance yesterday because I honestly thought I was running out of air. A clue – if I know you and I say “I am alive – put it that way” (and I am not smiling or laughing when I say it) when you ask me how I am I suggest you start worrying about me and not (as one of my friends did when I was seriously on the verge of calling an ambulance) laugh and say “you do make me laugh sometimes”.
So – where are we now???
I have had two appointments with the Oncologist and two appointments with the Heart Failure Nurse. Oh – and an Ultrasound Guided Biopsy.
The Oncologist is a nice lady (so is her Registrar). I am on Tamoxifen for the foreseeable future (the next couple of months at least). So I managed to dodge the Chemotherapy for the time being.
The first time I saw her the Oncologist did ask me a strange question which – to be honest – scared the living daylights out of me. “Has anybody told you you have got Marfan's Syndrome?”. Apparently I have got a few markers for it – one being my height (since when was being half-Dutch a symptom of a Syndrome???), one being slightly more flexible than most people, the last one being having a high palate (the top bit of your mouth). After “never heard of it” passed through my mind the next thought was “Good grief – not another thing I am going to die of???”.
Oh yes – the Oncologist wanted me to see a Cardiologist so they could advise on the best treatment for me. I am now in possession of a copy of the letter she sent to the Cardiologist in question (dated on the day of my first Oncology appointment). After seeing the first name of the Cardiologist I don't hold out much hope of a quick appointment – I have experience of “Medical” humans who answer to that first name (not as a patient though) and they seem to operate in a timezone oll of their own.
My next viewing of the Oncology Department will be in approximately three months (am waiting for the confirmation letter to come through).
The real downer is the Heart Failure thing. Although I did get a bit of a smile out of Friday's appointment (thanks to my very weird sense of humour).
Apparently the Heart Failure Nurse now thinks I may be a “Cause for Concern” (not as much as I think her scales are – but more about that in a bit). I have been either upgraded or downgraded (depending on how you look at it) from “I would like you to see a Cardiologist” at the first appointment to “I want you to see a Cardiologist at the second appointment.
If you read the blog post about my time in hospital you will know that the Nurses were worried about my blood pressure even then (it is lower than normal).
When you feel like you have done a circuit of Hinckley town centre on foot trying to find the hospital (thanks to Google Maps telling me to get off at the wrong bus stop) – you would expect your pulse and blood pressure to be raised due to the exercise??? Oh no – not mine. Apparently they were both lower than they had been the first time I saw her. Hence the upgrade (or downgrade) – and an ECG “just to make sure your heart isn't going to go into a strange rhythm".
Remember I something about me getting a smile out of the appointment due to my weird sense of humour??? Well, it was connected with a set of scales – a slightly less than accurate set of scales to be exact.
As a result of this flipping Heart Failure I have to weigh myself daily. If I gain or lose 2kg (or 4lb) in two days I have to either contact my GP or the Heart Failure Nurse because it might indicate a fluid imbalance. Fair enough – I weigh myself every day and (even though I wish I could gain a few kilos) I am now between limits.
On Friday the Heart Failure Nurse told me to step on her scales. Now – I know my sight is not all that good (and her scales were the old fashioned analogue ones) but even I could tell you that there was something wrong with them. Either that or I had managed to lose 4kg in the space of 6 hours (in which case I would definitely expect to be back in hospital). Luckily she admitted the scales were dodgy.
Now the only major concern (as far as I am concerned) is the argument between the Oncologist and my GP regarding some overdue medication which I am supposed to have monthly. I am not going to go into the story but – what I will say is that I am now worried that it may have an adverse impact on one of my other medicines if it doesn't appear soon.
Well – now you know as much as I do.
I have set myself a little challenge. Well, that is not quite true – two of my friends kind of talked me into it without realising it.
Regular readers of this blog (and people who know me personally) will know that I love words and language.
There are different ways of learning languages. You can learn a language as a native speaker, you can learn it because otherwise you won't get any sandwiches (or anything else you might be offered that you don't understand the word for) you might even miss out on useful information, you can learn it via textbooks and recordings, or you can learn it through a mix of the second and third options.
In my case – I learned English as a native speaker, the “sandwiches” method is how I ended up learning Dutch, the textbooks and recordings were how I learned French, and the mix of “Sandwiches” and textbooks and recordings was how I learned German.
The language I found the most difficult to learn was French (it is also the language I have forgotten the most of). This is because I couldn't get used to the way I was taught it. Remember – I learned Dutch through having to associate things directly with words (and the English translation wasn't provided half of the time). So, if you stand me in front of a “Hond” and ask me what it is I will be able to tell you it is a dog, if you ask me to get you something out of the “koelkast” I will automatically head to the kitchen and locate the fridge (the literal translation being “Cool Cupboard”), etc. Try the same thing with French and I can tell you a “Chien” is a dog but if you want something from the fridge you had better get it yourself or we will be here all day.
As my French lessons were served via textbooks and recordings instead of practical experience and real life connections I couldn't really make it stick. What I found the most difficult were the French tenses – and that was before we were told to “take the infinitive and add and remove different bits of it as appropriate”. Please – just give me the Dutch “Ik heb, ik had, ik heb gehad”, or even “Ik ben, jij bent, jullie zijn, hij is, zij is, zij zijn, wij zijn, U bent”, I can cope with that. Given a bit more time I could probably dig up the German versions of those from my memory bank as well.
Anyway – back to my little challenge.
This challenge kind of started as a result of me successfully guessing the English translation of a word I had never heard before in my life. (I have to confess that the word was connected with something I had just eaten – which made it that bit easier.)
I suppose the best way of learning a new language (apart from having no other option if you want to understand a word of what your Mum and her Dutch family and friends – as well as any other Dutch human you come across – say) is to be interested in both the language and the country in which it is spoken. The best way to do that is to have close friends who come from that country and speak that language. Oh good – I think I should have fun with learning this particular language. I am interested in the language and the country and I have close friends who come from the country (in fact – one of them seems to spend most of their time in the country in question).
So I decided to treat myself to a free audiobook which claims to teach the language I decided to learn in easy bite-sized chunks. From what I have listened to so far it seems relatively idiotproof – it even gives some explanations of contexts, etc. I am looking forward to carrying on with it.
I am not going to name the language in question – because I know that my friends read this blog and I want to try to surprise them if I can.
|youtu.be/rWVgbTBlH9M "Wanted (Dead Or Alive)" by Bon Jovi |
Please listen very carefully to the lyrics of this song before you read this blog post. They may have started out being about some kind of cowboy fantasy but - to me - they describe the effects of bullying so well.
I am always amazed at people's perceptions of the effects of bullying – especially if they have never been subjected to it. They seem to think that the effects only last as long as the bullying itself does (maybe fractionally longer). They also seem to think that the only person who has been affected by it is the person who is bullied.
Here are some other words which I consider to be very closely linked to bullying – Terrorism, Genocide, Murder, Manslaughter, Assault, Grievous Bodily Harm (GBH), Actual Bodily Harm (ABH), Mental Abuse, Torture.
I wonder how many of you would tell me that the above only affect the person who they happen to??? Or, how many of you would tell me that the effects don't last for a very long time???
Of course, you might well look at the list of words I consider to be very closely linked to bullying and think I am either exaggerating or I have totally lost the plot.
The answer to that is – neither. I am what some would call a victim and others would call a survivor of bullying and I wanted to tell you about my experience of the ways in which bullying has affected myself, my family, and my friends.
I am not going to tell you the exact details of the bullying I received (I don't want to be responsible for giving anybody else ideas on how to make someone's life miserable to the point of wanting to end it). I may give you the odd hint though during the course of this blog post as a means of explaining how it has affected myself and others around me.
Bullying can take many forms – Physical, Mental, Intentional, Implied, etc. If you are subjected to any form of it for any length of time you will hit the point where you believe every bad thing anybody says about you and you will believe you deserve all the bruises and pain you receive.
Here is a hypothetical question for you – what would you do if I walked up to you in the street and punched you for no apparent reason? Probably attempt to have me arrested for punching you. You would probably have a stronger case against me if I had picked on one aspect of your person I didn't like and used that against you – at least then you could probably sue me under the applicable Act (Racial Discrimination, Religious Discrimination, Disability Discrimination, etc).
I am going to start with the one “side effect” of being bullied which I have never been affected by – but I can honestly understand why people do become affected by it – Substance addiction (Drugs, Alcohol, etc). You could say that the side-effects bullying has had on me are rather more easily hidden and have little or no financial cost unless I choose to subject you to them.
If you meet me you may think I am a pretty tough cookie. The truth is more in the word “cookie” - they crumble easily if you bend them too far. Calling me “tough” is like calling a jelly stiff and unmoveable. Jelly is supposed to be wobbly – if it is stiff you have obviously made a mistake when reading the instructions on how to make it.
You may also think (second thoughts – chances are you will also think) I am the prickliest character you have ever met – and you would love it if I were to shut up and let you get a word in edgeways. Trust me – you do not want me to shut up on first meeting you. If I am talking to you you still have a chance to convince me that you are trustworthy. If I go silent you have a big problem (unless I have asked you a question and I am waiting for your answer) – my next course of action will be to leave your presence by the quickest means possible never to (willingly) return again. Me going silent on you after first meeting you means that I consider you to be a mortal threat to me.
Here is something else – the less friendly you appear at first the more likely I am to talk to you. Experience has taught me that the friendliest looking humans are the ones who are the most likely to cause me trouble, pain, and heartache. However, on the flip side to that – I am one of the people who is least likely to judge you on either appearances or your life story so far. What I mean by that is – you can look like the most dangerous human in existence and decide to tell me about your past drug addiction, or your Mental Health issues and – unless you do or say anything to damage me - I will not judge you for it. The minute you make me feel uncomfortable all bets are off.
Hmm – apparently those of us who have been subjected to bullying will be all too happy to inflict physical violence on other people whether or not they deserve it. Here is a confession for you – I have only ever wanted to inflict physical violence on one person (by which I mean cause them serious physical injury) – and that was because I felt they were putting me in a situation not unlike I had faced when I was being bullied – more to the point - I didn't think they were listening to me because I felt like they were trying to steamroller me into submission. Of list of many and varied reasons for me not attempting to inflict serious physical damage on this individual was actually their job (and – no – they weren't a Police Officer). In the end I merely got more stubborn and vicious in my arguing. (It is a massive surprise that they are still talking to me.)
I find it extremely difficult to trust people – even now. I may give the impression I am totally comfortable in your presence but be very careful. One wrong move and my prickles will come out.
On the other side of that – once I do trust you - you have found a friend who will do anything for you. I will support you, turn into a Sounding Board for you. Basically – I will do anything in my power to make your life that little bit better for you. I am also extremely protective of my friends (unless you do something to break my trust – in which case I strongly suggest you leave me alone otherwise the consequences could be very nasty for you).
I said I was protective of my friends, didn't I? Well, you can say whatever you want to about me – I have heard every negative comment you could make – but - the minute you start badmouthing my friends or family - watch out. And don't think you will be protected if you were my friend to start with because you won't.
This may surprise you but I am not very confident – I wish I could be the sort of person who isn't afraid of blowing their own trumpet or “bigging themselves up”. In fact, I am the exact opposite. Don't just praise me for something like writing what you think is a brilliant blog post – I won't believe you (unless you have ended up in my “handful of heroes” who I trust with my life). Prove it by doing something concrete that will show me you like it – you can offer to help me with something you learn I have a difficulty with as a result of reading my ramblings, you can tell me that you have treated someone differently, you can even take me to events so I can review them, etc. Even better – throw ideas at me for blog posts which you might like reading.
I prefer my own company. Don't get me wrong – I like being with my friends. However, there are times when I feel like I have to pretend to be exactly like everybody else. There is nothing more mentally tiring than acting “normal” especially when all you want to do is have a major “meltdown” - crawl into a corner and either hide or die (depending on how stressed you feel).
Depression? Yes – I have had it. Suicidal feelings? Same. Actually seriously considered attempting suicide??? At least three times in my life. In fact, little do they know it but one friend actually stopped me from acting on it last week. I am not going to tell you who they are or what they did but I really appreciate it.
So – you see – bullying doesn't just affect the person being bullied. Nor do the effects only last for fractionally longer than the actual bullying. After all, it has been nearly 30 years since I left compulsory education and nearly 10 years since I got made redundant from E & F Services Ltd (where I was also bullied by the man who ended up being my only boss) – and I still feel the effects of it every day.
Some days I consider myself to be a victim of bullying - other days I consider myself to be a survivor of bullying. The one thing I wish we could do is create a society where noone has to suffer bullying of any kind – no matter how old they are.
|I feel like I owe you a massive apology for my absence from my blog for so long.|
It is no exaggeration for me to say that there were times when I honestly wondered if I was ever going to be able to blog again.
If you follow me on Facebook I will let you skip this blog post if you want to – you know what I am going to talk about in this blog post.
The short version of the story is that I ended up in hospital. Yes – as in my second least favourite establishment in existence. I have been out for a couple of weeks now and have finally managed to get my head together enough to get back to blogging.
So – what happened??? How did I end up in hospital???
The short answer to that is – extreme shortness of breath. To the point where I was walking from lamp post to lamp post. Not being able to get down my driveway without getting out of puff is what actually convinced me that I should go to a Dr. What convinced me that I might be poorly was missing a gig by my favourite female singer and not actually caring (put it this way – if I had been even 50% fit I would have tried my hardest to get there and been really upset if I didn't make it).
Anyway – I ended up getting a taxi to Leicester Royal Infirmary Accident & Emergency Dept. There was no way I was going to ring for an ambulance – Ambulances are for emergencies and (to me at least) that means you either have to be flat on the floor unable to move or unconscious. Being able to walk – no matter how slowly – doesn't qualify you for an Ambulance journey.
In fact, I was absolutely convinced I was going to be sent home after being told off for wasting precious NHS resources. Shortness of breath didn't feature anywhere on my list of “reasons to annoy a Medical Professional” - no matter how extreme. This is because I knew there is one thing I have never suffered from and that is asthma.
So – I get to A & E – report at the desk – get paperwork and get told to sit and wait for my number to come up on a screen. That was the first thing which I found slightly aggravating. You would have thought that a hospital would have designed the “foot passenger” bit of their new A & E Dept to cater for everybody who walked in???
Sorry – they fell into the usual trap of “people with sight problems don't exist in our world”.
It was OK when the number came up in the “holding screen” because that was white text on an black background. When my number came up it turned into white text on a light green background – and nobody was calling the numbers out. (They can be very thankful that I was too poorly too really complain about that – or they would never have heard the end of it.)
I was seen by a very nice ACP (Advanced Care Practitioner) who ran some tests on me and decided that I warranted further investigation. So I was told to lay on a comfortable looking trolley bed and wheeled off into what turned out to be the “High Dependency” bit of A & E.
You would have thought that seeing a poster from the corner of my eye which said words to the effect of “if you find yourself in here you are being assessed for potentially life-threatening conditions” would have given me some clue as to exactly how serious my situation was. Good job it was extremely late and I wasn't firing on all cylinders as far as my mental processes are concerned – or I would probably have started to seriously panic at this point. As it turned out even one of the Drs who examined me said there was only a 50/50 chance of me being admitted..
I woke up to exactly how serious things were when I found myself in an ambulance on my way to Glenfield Hospital. If you don't know anything about Glenfield Hospital it is a Heart hospital (in fact – it is one of the few centres in the UK which has an ECMO machine).
So – I find myself being admitted into Glenfield Hospital. (Did I ever tell you exactly how much I hate hospitals???)
Some more tests are run on me – and they seem to wake up to something else I told the ACP at Leicester Royal Infirmary (which I later end up wishing I had kept silent about – the reason for that will be explained as we get a bit further on).
One of the tests they ran on me is the one I call the “Jumpleat Test” because it always makes me feel like a car which won't start (take car that won't start - attach wires to battery and attach other end of wires to the battery of a car which has got it's engine running – and your car should eventually start) – I think the official name is an ECG.
Eventually I get the first diagnosis. I have fluid in my chest. First things first – that need to be tested to find out what has caused it. “We need to put a drain in to get some of it out. A Drain??? Now – if you ask me to describe a drain to you you will be informed that it is very big – definitely too big to fit between someone's ribs. Certainly not the diameter of the ink containing bit of a biro (which the drain turns out to be). After some confusion involving me mishearing “Cytology” as “Psychology” (only one of them can be performed on liquids) – the temporary drain goes in and some of the fluid is drained out of me. This improves my breathing slightly for the grand total of approximately 12 hours before it gets drastically worse again (and when I say “drastically worse” I mean it is a good job I am in a place with oxygen on tap because I cannot breathe very much at all).
So I end up on oxygen (“Oh Joy – Oh Rapture Unforeseen”). I also end up getting a permanent drain put in (this involves three injections of Local anaesthetic – each one deeper that the last) to drain the rest of the fluid out. Then I am informed that the drain will not be coming out until the results of the Psychology – sorry – Cytology test come back.
Remember I said I had mentioned something to the ACP in A & E that I ended up wishing I had kept silent about??? Little did I know but this was going to be the cause of the next two bombshells and one puzzle to hit me. I had mentioned a lump in my left breast and a lump under my left armpit. The lump in my breast was going to be the focus of the next lot of investigations. (Could have been worse – one of the Drs did threaten me with a biopsy of the lining of one of my lungs.) I had expected it to be Cancer – all the signs were there before I went into hospital (in fact – had it not been for the extreme shortness of breath which got me into hospital – I was quite happy to let nature take its course and let the Cancer kill me on its own).
The first bombshell to detonate itself was being told one night that – yes - it was Cancer and an Xray and a CT scan had shown up traces of it on my bones and lungs. (the next thing to do was put me through an MRI scan to find out for definite how far it had spread). The next bombshell was more like a clusterbomb. One minute you hear the words “Palliative Care” mentioned in relation to your condition – then you find yourself faced with a visit by two groups of people who you wish you never see again – one lot is the Oncology guys from the Infirmary and the other lot is the Palliative Care nurses. By this point I am wishing Euthanasia was a legal option (if only to escape the visitations from the Palliative Care nurses – their appearance just served to depress me and make me wonder if there was any point in trying to carry on living).
So -let's see how far we have got so far.
I am in a Respiratory ward – due to fluid in the chest. I have been viewed by Oncology and Palliative Care nurses. However, I have yet to have had the one test which I will definitely believe when it tells me one way or the other whether or not I actually have Cancer – the famous Biopsy.
The next two groups of people who decide they would like a piece of me are the two groups who – if I was a betting person – I would have given you very good odds on actually being the first in the queue to run tests on me – Cardiology closely followed by Heart Failure.
Why would I say that???
Simple really – remember I had a hole in my heart when I was born??? Remember it was mended when I was a baby??? Nobody was ever going to convince me that that operation would be a lifelong success. And when I say “lifelong success” I mean I never had any great expectation of hitting that Biblical “Three Score Years And Ten”.
So now I still have the drain in me – and we have two definite possible causes for the fluid in my chest. It is either Cancer or Heart Failure. (Me??? I am actually hoping for the former. The latter is not something I even want to consider.)
By this point I have already been put on water tablets (intravenously) to further help with the drainage. I later get switched to tabet form for these.
Then I start to get really annoyed with one group of Drs. (This is the time when I start to realise I am getting better – until this point the Drs could have said absolutely anything to me and I wouldn't have batted an eyelid. Me getting annoyed by what I see as disorganisation and people not talking to each other whilst seemingly expecting me to quietly go along with anything they say is most definitely a sign that Inky is on her way back up.)
What happened is that one Dr had told me that they were planning on putting me on two different types of tablet (ACE Inhibitor and Beta blocker) but they were not going to do anything with them until the drain came out. Fair enough – this was simple enough for me to file in my brain – no heart tablets until chest drain comes out.
The next Dr to speak to me on this subject tries to inform me that I am going to be put on those tablets straightaway. He gets politely informed of how I understand events are due to occur – he goes away to check and comes back around ten minutes later with yet another version. I am going to be put on the ACE Inhibitor (Ramipril) even though I have still got the drain in. However, if it plays havoc with my blood pressure they will have a rethink.
Ah – yes – my blood pressure. Let's just say that that is a source of constant worry to the nurses who measure it anyway. Apparently the top figure is supposed to be at least 110 for a live functioning human at rest – the highest I managed was 109. The “Official” lowest was 92 (the unofficial lowest was 93 in my right arm and 76 in my left arm – taken at the same time – put it this way – a top figure of 80 iz enough to land you in hospital on its own). “Do you feel dizzy? Do you have a headache?”, Nope – I feel perfectly OK thanks.
So it is a bit stop/start with the Ramipril. I don't like this one bit. I hate taking tablets as it is but if you tell me I have to take them I prefer to follow your instructions to the letter.
The next thing they dose me up on is Iron tablets. (The irony of me being in what I classify as the “Vitamin Bay” of Ward 29 isn't lost on me – the beds are all numbered B1 through to B10, which even I know are vitamins.)
Then I am informed I have been put down for an MRI scan. “Do you get claustrophobia?”. This turns out to be the most fun experience of my entire stay in hospital. (Yes – I know - I am strange.)
There are two reasons for this – the first of which will be blazingly obvious to anybody who has read this blog before (or seen me in real life) – the lyrics “my eyes are dim – I cannot see – I have not brought my specs with me” from that old campfire song are extremely applicable here. Even more applicable is the Dutch translation of “Dat wist ik niet en bovendien dat kan ik zonder bril niet zien” (or - “I didn't know that and above all I cannot see without my glasses”). Ear Defenders on – glasses off – eyes closed – and away we go for what turns out to feel like a microwaving session with a round of “Name That Tune” thrown in for good measure (the Scanner itself played bits of tunes I recognised as it worked).
Eventually the results of the Cytology test came back and I was released from the drain – but not before the most frightening experience of my time in hospital.
I bet you thought that being told you have Cancer and Heart Failure would be the most frightening things that could happen to someone??? Nope – they were not exactly the easiest things to deal with I admit but at least they didn't involve someone approaching me with a bladed weapon with me not having much of a clue as to why. The only three words I understood of the explanation were “Freehand Core Biopsy” (finally). Now – I am used to listening to people with strong accents. My Dutch friends and family have got pretty strong accents when they attempt to speak in English – my Czech friends are the same. However, at no point (unless of course my Czech friends use a Czech word when speaking to me) do I need subtitles in order to understand them, The Dr who did the Biopsy might as well have delivered the explanation of what they were about to do (and why) in Gujarati - or whatever their native language was – their accent was so strong I needed subtitles in order to understand them.
When you realise I hate hospitals and Drs to start with – and the two quickest ways to make me feel very uncomfortable are to give me any kind of medication without first telling me what it is, and, approaching me with any kind of sharp or bladed instrument (to the point where I hate making appointments to get my hair cut – never mind actually getting it cut) you will realise exactly how frightened I was. In fact, the only thing which actually kept me in that room long enough to have the Biopsy done was the fact that – at that point – I was still attached to my tank via the chest drain – meaning I couldn't move as fast as I would have liked to.
I actually found out what the Dr had been talking about when I got home two days after the Biopsy to find a copy of a letter they had sent to my Dr explaining what they had done and why.
So – where are we now?? I have been released back into the wild. I have also been discharged from the one Department who I really wanted to be kept an eye on by – Respiratory. Have managed to (finally) get the Palliative Care nurses off my back for the time being. Had my first appointment with the Heart Failure Nurse outside a hospital setting (I really wish I could have stayed with the nurses at Glenfield because I had come to trust them and feel comfortable with them). Have got my first appointment at the Oncology Department at the Infirmary on Wednesday.
I will leave you with the one thing which told me I was ready to be released from captivity. On the last morning I was in hospital the Tea Trolley came round – closely followed by the Blood Test nurse. The Tea Trolley lady got a chirpy “Hello Jenny”. The Blood Test nurse got a resigned sounding “Hello Vampire”. Blood Test nurse replied “Hello Victim – sorry – I mean patient”. Put it this way – when my sense of humour comes back like that I definitely need to be at home (so I don't have to worry about offending anybody),
Tears For Fears released a single called “Shout” way back in the 1980's (I think). The chorus came into my head as I was thinking about writing this blogpost - “Shout! Shout! Let it all out. These are the things I could do without. Come on – I'm talking to you. Come on.”
Before you think that this is going to be yet another rant about Politics or the current state of the world – well, it is and it isn't.
We all have our own opinions about the current state of the world and the people who appear to think they are in charge of it. However, what would happen if we put the real Politicians in charge???
You might be looking at the above paragraph and thinking, “Ineke has finally lost the plot completely – the real Politicians are the ones who are in Councils up and down the land, as well as Westminster. What does she mean by 'put real Politicians in charge'?”
Let's just say that my opinion of the current Political Establishment can be summed up by re-arranging the following words into a well-known phrase or sentence - “Idiots” “Are” Self-serving” “Politicians”.
So – who do I consider to be the “real Politicians”???
Anybody and everybody who has acted in such a way that they have attempted to improve the lives of the people they come across – in whatever way they choose. Also, people who have used their personal experiences to educate people about a side of life they might not otherwise realise exists. Let's not forget those people who have stood up for what they believe in – be it by putting their job at risk through blowing the whistle on corrupt practices, or by joining a protest for a cause they believe in (be it setting up camps in a city centre to highlight the treatment of homeless people, or by helping in another way).
I have a list of people who I consider to be the “real Politicians” (the fact that two of them have actually been what is commonly known as Politicians – Councillors – is something I can forgive them for). With your permission I would like to name some of them (yes – some of the names have appeared elsewhere on my blog for other reasons but some names will be new to you).
James Patrick – ex-Metropolitan Police Officer – now attempts to educate people about all sorts of issues relating to the Politics of the world. Also an author.
James McLean – If you live in Leicester you will definitely have heard about this man. He is passionate about the Homeless (he has been Homeless himself). He has a habit of setting up camps in and around Leicester City Centre. He is also the brains behind the Homeless Party.
Derek Lee – a Clinical Psychologist who claims to be retired. Last heard of running the Brighton Marathon to raise money for the charity “Mind” to help fund facilities for Mental Health provision (see what I mean about him claiming to be retired??? I am not entirely convinced that Psychologists ever retire).
Roger Nield – retired Police Officer who now plays a role in a scheme down in Surrey for Military Veterans.
Wayne Naylor – ex-Leicester City Councillor who has a very big heart for the community with particular focus on those people who are on the outskirts of society.
Nathan Constable, Mike Pannett, Constable Chaos, Police Commander John Sutherland, Sgt Harry Tangye – all connected with the Police Service (one theoretically retired) – This little lot (plus a few dozen more I could mention) all use Social Media, blogs, and their own appearances on TV, to educate people about the real stories behind the headlines regarding Policing.
John Coster and Laura Horton – Well, what can I say about these two??? Both of them have a big heart for Disabled people (well they do both work for LCiL). John is also responsible for a concept called “Social Media Cafe” where groups of people can get together and learn from each other. Laura plays a big part behind the scenes in an event called “Choice UnLimited” - which is a kind of Marketplace type roadshow where Disabled people, Carers, etc, can speak to providers of goods and services face to face in a non-threatening environment.
The gang at The Real Junkfood Project (Leicester Battalion) – Not only does this group of people cook meals from food that is perfectly edible which shops throw away – they also are one of the friendliest bunches of people I have ever had the pleasure of being involved with. They volunteer their time willingly to – as the slogan on the tshirt I am currently wearing says - “Feed Bellies - Not Bins”. There are other Junkfood Projects all over the UK.
Julian Harrison – This man divides his time between his Mental Health work and his work for the Holocaust Memorial Trust. If you get a chance to hear him talk about either subject you will come away feeling educated without feeling like you have been lectured. He has personal experience of Mental Health issues and the discrimination faced by Jewish people.
You may think there is someone missing from that list – as in the human typing this blogpost???
There is one very good reason why my name is nowhere near that list – I do not consider myself to be remotely Political. Yes – I try to educate people about the challenges I (and others) face through my blog. Yes – I have been known to volunteer for both LCiL and The Real Junkfood Project. Yes – I do work with Roger Nield. Yes – I do support the various causes and organisations mentioned in this blogpost. And – yes – some of my blogposts do end up with a Political twist to them. But – to me – being Political is a whole different ballgame involving more noise than I am willing to make. I am the one who is usually found behind a computer keyboard – although I will speak up in person if the issues being discussed are ones I have personal experience of (for example – the “Purple Pound” Discussion Panel) - or if I think the topic is one I can usefully speak out about (just try to tell me that the Police are there to be abused, or they shouldn't eat or drink – let alone carry a firearm in public – and see what I have to say about that. I consider the Twittercops I follow to be friends of mine).
I want to finish with sharing things which two Wise Owls said to me (on separate occasions – some years apart). The Wise Owls will know who they are.
The first one said, “You will never know what it is like to be a 50 year old man”. (Well, I was a 30 year old female at the time.) That one taught me that we all have different experiences of life. However, the Wise Owl also taught me (later on) that we can use our differing experiences to help each other.
The second one said something which actually keeps me blogging even when I feel I have nothing important or Earth-shattering to say. “It is all very well signing an online petition but that only takes 5 seconds and then it is forgotten about. It takes hard work to make a real change in the world and your blogging is an important part of that.” The Wise Owl is still one of my biggest supporters when it comes to blogging.
I have a challenge for you – find something you are passionate about and start trying to make a small difference to that situation. It can be Mental Health, Homelessness, Lousy designs for objects you use regularly, etc. You can write letters to your local paper, start a blog about it, become an activist (or a “Highlighter” if you prefer), or just speak about it, or volunteer with an organisation which is dedicated to that particular cause. You could even run a Marathon.
|One day last week I shocked myself when I realised that I have five people (OK - let's face it - men) with PhD's in my list of friends and acquaintences. The list could be longer but those are the ones who immediately sprang to mind. If you are interested the subjects - in order of how long I have known the people - are as follow; Advanced Maths (I have always hated Maths so - to me anything above a GCSE is "Advanced" but I think this person specialised in Velocity), Psychology, Quantum Computing, some strange branch of Science, and Photography.|
Me??? Four GCSEs - C Grade and above - and one NVQ (National Vocational Qualification) Level 1 in Business Administration, and various other Certificates in random subjects. Not forgetting the sheer hatred of the idea of going anywhere near a classroom ever again.
The funny thing is that - according to nearly every single school report I have dug up and read so far - I should not be writing this blog. Apparently I was useless at writing at Secondary School (the disorganisation still applies though in some instances).
I wonder what my school reports would have said if all my achievements were taken into consideration though???
There were days when - honestly - turning up to school was almost more than I could manage to do. What felt like 24/7/365 bullying from the other students wasn't exactly conducive to me being "ready to learn" anything except that I should crawl into a corner and kill myself quietly.
Oh - and I have a message for those teachers who thought I worked too slowly for their liking. Trust me - I was working as fast as I possibly could given my circumstances. Nearly all of you made it obvious - by your attitude towards me and how you dealt with me - that any attempt at asking you to alter your lessons, classrooms, etc, to suit my needs would just lead to arguments and further difficulties. As it was I was just seen as a lazy nuisance when I actually ended up having to teach myself how to cope with your lessons (and in some cases both the equipment you used and your method of teaching) - on top of navigating myself around your school grounds.
(Let's just say that one teacher informing me - years after I had escaped the Education System - that the staff at one school kept having meetings on what to do about me - without inviting the one person who could have helped them - was not exactly conducive to me feeling any less angry about my school days.)
I could bore you to sleep with the list of things that I ended up teaching myself just to get through the Education System. Some of the things are no longer useful but other things are what help me to hide the exact extent of my difficulties in most instances nowadays.
As you might have guessed by now - I work best on a "Trail and Error" basis. I also prefer to be able to ask seemingly stupid questions in order to help myself learn. To put it bluntly - I hate being told to do something in a certain way because "that is how it has always been done" or because "everybody else does it like that". Tough - I am not everybody else and I have a way of working which suits me better than yours.
I remember when I was about to sit my RE (Religious Education - sometimes called Religious Studies) exam. Due to the school's belated realisation that I may have had some minor difficulties coping at school - I was allowed special priviledges during the exam. Unfortunately, these apparently did not include my RE teacher deciding that he knew my sight better than I did.
The hall where we did the exam was lit by what appeared to me to be spotlights in the ceiling. These were spaced out in such a way as to give me problems with the contrast between light and dark (as well as potential difficulties seeing what I was doing if I had not sat under a light).
The RE teacher saw that I had parked myself under one of these lights and immediately attempted to get me to move away from it. Their exact words were "why are you sitting under a light? Wouldn't you be better off somewhere else?"
Luckily the imminent start of the exam prevented me from telling the aforementioned teacher why I had decided to sit where I did - otherwise I would probably have been ejected from the exam.
It has taken me a very long time to feel comfortable enough in my own skin (and life) enough to be able to stand up for myself and argue with people who I was led to believe were better than me just as a result of their paper qualifications - without going into Defensive Mode.
In fact - my two biggest highlights so far have both involved members of my personal "Mastermind Brainiac Club" (as in two of the five humans mentioned at the start of this blog post).
There is something bittersweet about using the skills your teachers unwittingly taught you (and which appear on no version of the school curriculum I have ever seen) to make something you want to happen actually happen. Unfortunately - the fact that it was someone who is now a good friend of mine who got caught in the crossfire between the "me" of my schooldays and the "me" of when I met them - is something I will regret for as long as I live. I am not going to divulge the specifics on here (they are not relevant) but what I will say is that it has never been a good idea to make me feel like I am a Lab Rat who just exists to be experimented on for your pleasure. That is the best way for me not only to get very angry but to want to get something out of the situation too - by any means necessary. (You could say that the non-appearance of the one piece of equipment- which I was promised by a certain teacher at school which would have greatly helped me with my work was the start of that downward spiral.)
The other highlight is much more pleasant and uplifting (for me anyway). As you may already know I am involved in a Photography project with someone - based on the challenges I face as a result of my sight. Somehow - through this project - I appear to be educating someone with a PhD in Photography about sight. Now - if you had told me three years ago that I would be able to do that you would have been politely requested to make an appointment to get your Mental Health assessed. My discussions with the photographer I am working with suggest that they are indeed looking at the world in a different way as a result of our project.
If I were in charge of the Education System I would scrap it and start again from scratch. No targets as far as Exam results and paper qualifications go for a start. I would also design the lessons to meet the needs of all the students individually. (For example - if the lesson involved working out the volume of a cube - I would find a way of making the cubes accessible for every student to use. Even if it came to painting lines in the grooves to separate the squares. And - yes - that does come from personal experience of one particular Maths lesson.)
I would also ensure that every school conformed to a "Sight-friendly" layout - including stairs and lighting. I would even subject the teachers to a school uniform of sorts. My favourite teacher had one item of clothing which I absolutely loved because it was literally easy on my eyes. This teacher could wear a crisp, bright white shirt if they wanted to as long as they wore their navy blue tank-top over the top of it. Trust me - it made a change from being blinded by non-stop oceans of white shirts (especially in bright sunshine).
I would not make it obligatory for the students to all work in the same place or at the same speed, or even in the same way. We all have different ways of learning - I prefer reading, writing, and interrogating the nearest "Human Library Book" I can find on the subject. I also prefer working away from other people (unless it is something like Creative Writing) so I can concentrate and take breaks when I need to. (Let's just say that - far from being a punishment - the amount of time I spent in Solitary on my own in the my first year of Secondary School was my idea of Heaven.)
To finish this off (yes - I am aware that it is more of a ramble than usual) I just want to say two things.
On paper I may not be the most highly qualified human you have ever met (or read the ramblings of) but I would say that I am reasonably intelligent. My life experience could probably get me at least one PhD (if they gave out paper qualifications for coping with a Sight Problem and Sideways thinking that is). This blog is proof that I must be reasonably on the ball as far as "living in the world" is concerned - otherwise I wouldn't be able to write about most of the subjects this blog has covered. I may not have experienced some of the subjects I have written about directly but the people who have shared their thoughts with me must think I have enough of a way with words to be able to tell you about them (when they allowed me to share them with you of course).
The final thing I want to say on this subject is this - I found something intriguing on a Psychology website recently which made me think. It said something along the lines of "instead of engaging with Therapy in order to cope with life engage with life itself". Maybe that is what is currently being lost in the continuous upheavals of the Education System - instead of being taught subjects that people in power think we need to know in order to cope with life - we should be using the experiences we have in life to teach us about education.
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|I know - you are probably thinking "What the Bleep is this blog post going to be about? Why has Inky chosen such a strange title?"|
Allow me to explain. I have various reasons for choosing the title - but I will share the two which I find easiest to explain in plain English.
The first one is that - to be totally honest I was actually dreading Christmas and New Year's Eve last year. It was the 10 year anniversary of me realising my Mum was going to die (and not being able to tell either her or my Dad - they found out a few weeks before she actually died).
I had two dreams over the period between Christmas 2006 and New Year's Eve 2006 - one of which turned out to be a premonition and the other of which I still cannot exactly connect with the outcome.
The first one I didn't think anything of - it was of two cartoon baby rabbits. One of the rabbits was crying for its Mum and the other one was telling it that she was no longer alive.
The second one was the one which woke me up completely to what was about to happen.
I had already had a feeling at teatime on Christmas Day that we would no longer be with the four of us (my Grandma, my parents, and me) at Christmas. The feeling of shivering when I was in a boiling hot room was something I will never forget.
The second (premonition) dream was extremely strange. I dreamt that I was in a car driving past Welford Road Prison in Leicester when I asked whoever was driving about registering a death. Very weird.
Even weirder - fast forward to 10 February 2007 and - yes - you guessed it - I was in the exact same place when I asked my Dad that exact question (my Mum having died the previous Friday).
The second reason for the title is a report I had seen (or read) about an experiment which was carried out with a group of people. They were individually taken into a room with nothing but a table and a chair. On the table was a button which - if they pressed it - gave them an electric shock. The experiment was to see how long people could stand being alone with their own thoughts. Put it this way - the answer turned out to be "not very long at all".
As someone who is more comfortable on their own than with other people I think I would have blown the testers' minds. I really feel sorry for people who are scared by the idea of being on their own with their own thoughts without distraction.
I think I have stated before that I have a very vivid imagination - and some of the thoughts my brain comes up with might very well scare the living daylights out of people if I chose to broadcast them. Let's just say that there are certain words and phrases that it is not exactly advisable to say in my earshot - for example - someone announcing that they are "separated" (as in living separately from their husband, wife, or partner) may be stunned if they realised that I am amazed that they are still standing in one peice. My brain suggests that the word "separated" - when applied to an individual - can be applied to an egg, a model of a steam train, a jigsaw, a multi-sectioned newspaper, etc. It does not apply to a human who is standing in front of me with all limbs, etc, apparently intact. Applying this word to individual humans just makes me think of either the film "The Chainsaw Massacre" (which I have never seen) or the aftermath of terrorist atrocities and accidents, etc.
Another thing you will know about me is that I love languages. I spent the afternoon on Christmas Day reading a book about Rotterdam (published 25 years after the end of the Second World War). Yes - it was in Dutch. New Year's Eve found me reading more books written in Dutch - Three of them were a course on the German language and one of them was a course on the English language (Boy - were English people a lot more polite when that book was written!!!)
Hold on a minute - can't I already understand both English and German??? Yes - I have got GCSEs in English, French, Dutch, and German (my French is very rusty indeed and my German is better but only because of the fact it has some similarities with Dutch - and my Dad still uses the occassional German word when he is speaking in Dutch).
We all need to do something which scares us occassionally. It might be (as in my case) travelling to a strange place in the dark, or it might be skydiving. It might even be driving on an icy road which has water on both sides of it but no barrier to prevent the car falling in if it starts to skid towards the side of the road (I was actually in the backseat of my Dad's car travelling between Holland and Belgium coming back to England after one New Year's Eve trip several years ago when we did exactly that. Not an experience I wish to repeat.)
Just being alone with your thoughts might well be your worst nightmare. We seem to be getting towards the point where society encourages us to fill our lives with distractions like Social Media, our friends, TV, etc, so we don't really have to deal with what goes on in our minds before it is too late.
(I think I can name one person who will be shaking their head at that last paragraph and wishing I would leave their job to the professionals. Seriously though - I think we are in danger of having to employ lots more of this person's profession if we don't get back to being more comfortable being in our own skin, space, and minds on our own).
My favourite Motto happens to be the Motto of my beloved Rotterdam - "Sterker Door Strijd" which literally translates as "Stronger through Adversity". However, the word "Strijd" can also be translated as "Striving" - as in striving to do something you thought was impossible.
I have several friends who have done things which seemed to be impossible - some were minor events like running a half marathon (this person is hoping to run a full marathon this year), some were major personal achievements like surviving Domestic Abuse, or seeking help for a Mental Health problem, or just struggling on with life in the face of severe permanent pain. One of my friends took extreme steps to highlight the issue of Homelessness in Leicester - by camping out on Jubilee Square over Christmas and New Year. Another one started their own Publishing Company.
I want to finish this with a thought. At my Dad's house (at least I think it is still in my bedroom there) I have got a t-shirt which says something along the lines of "It is not about achieving your goals - it is about going above them".
You may not feel brave enough to run a marathon - or do any of the other things I have talked about. Getting on with your life might seem like the most difficult thing you can cope with at times (I know that feeling all too well). Just find something the idea of which seems impossible now and work towards achieving it. You will be amazed at the confidence you will get at the end of it.
Just out of interest - there is a kind of sweet irony in the fact that I have put a blog post titled "All That Scares You" in the category "Being Me". "Being Me" was originally a song on an album called "All That Scares You" by a Dutch Rock Group called Plaeto (wasn't the original Plato a Philosopher of some sort???).