|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.
|On Sunday I found out that one of my friends from Scribbles had died. This meant that Scribbles was cancelled for obvious reasons. However, I know that John Farnsworth's favourite exercise was to pick a word and get the group to write on it for 5 minutes. (The trick is to write whatever comes into your brain without thinking about it.) I have decided to do this exercise in his memory.|
Friendship is a strange concept because you never actually know you are in one before you are in it. There are good sides and bad sides to friendship - some can turn very nasty indeed but most leave you feeling cared for and wanted. That just about sums up the feeling I get from the bunch at Scribbles (as well as my other friends). You can also share in an activity without worrying what the other people think. Friendship is another way of being kind to someone in need of something - maybe a hug or a kind word. They say Love makes the world go around - but it starts with Friendship.
The above might not actually make one bit of sense to you but I timed myself for 5 minutes and that is what I came up with. It is a fun thing to do if you have got some time on your hands - and it giveyour brain a workout.
|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.
|This blog post has been bubbling away in the back of my brain for a few months now. It is also a blog post which I am actually the least qualified person to write as I have no direct experience of the topic – as yet.|
A few months ago we were talking at Scribbles when Mike Southwell told us a horrifying story about a man who he knew and their Bank Account.
I cannot remember the exact details of the whole story but I will tell you what I do remember.
The man was what would be considered a Vulnerable Adult. He also had a Bank Account. For some reason (which escapes me at the moment) if the man wanted to get some money out of an ATM he asked passing strangers to type his PIN in. Eventually, it was noticed that quite substantial amounts of money had gone missing from his Bank Account (the man only withdrew small amounts). This is where the problem started.
As Mike pointed out – Banks don't disclose details of Bank Accounts to anybody except the person named as the Account Holder. That is fair enough you might say – and I would agree with you in most cases.
But what happens when you have someone with Bipolar who is in their Manic cycle, or, like Mike's friend above, they are seen as having Mental capacity but need physical help with certain things??? Or if they can be classed as a Vulnerable Adult for any other reason???
At the moment there only appear to be two solutions to the problem (both of which remove the independence of the vulnerable person to a greater or lesser extent). You can either go for “Power of Attorney” or you can open a joint Bank Account.
However, they are both things you have to do. The Bank wouldn't get involved in any other way (except when they start charging for unauthorised overdrafts).
I was discussing this with another friend of mine whose son is classed as a Vulnerable Adult, and she confirmed that she will not be informed about anything connected with her son's Bank Account. I asked another friend – who has experience of dealing with Vulnerable people both as a Police Officer and in one of his other roles – who confirmed what I stated above about the Power of Attorney and the Joint Bank Account are true.
There needs to be a system in place where the Account Holder (or a relative) can nominate someone for the Bank to contact in the event of suspicious or unusual transactions. A bit like arranging for the Bank to contact you if you make a large purchase if you have previously been a victim of Identity Theft. Instead of the onus always being on the friends and relatives of the Account holder to know that they need Power of Attorney or a Joint Bank Account – which many do not realise until it is too late.
How can a Vulnerable Adult (who wishes to keep as much of their independence as possible) be assisted to achieve this???
Also, what happens when the Account Holder becomes so incapacitated they end up in hospital, or deceased, before anybody realises what has been going on???
The entire Banking System needs a total overhaul to put the Account Holders (and their nominated representatives) in charge – or at least stop the nominated representatives from having to jump through legal loopholes in order to find out what is going on.
|I wouldn't usually put a “Trigger Warning” on my Blogposts but this one definitely needs one. It contains thoughts of a Disturbing Nature as well as touching on the subject of Suicide.|
There are two things about me which can become apparent very quickly in certain situations – I will fight for my friends and I am stubborn. When I say the second one I definitely mean it – let's just say that I wouldn't waste my breath trying to talk me out of something if I really want to do it, if I were you.
My stubbornness can be a very bad thing (especially if you are at the opposite side of it) but it did indirectly save someone's life.
I have got a friend who has an Alphabet Soup of Mental Health issues (and when I say “Alphabet Soup” I mean I have lost track of the acronyms for them). I am not going to name my friend, or give any identifying details about them, because they are not really relevant to the blog post – what I will say is that they gave their permission for me to write this blog post,
When it comes to Mental Health I fall into the “Uneducated Idiot” category. As in – I have suffered from Depression myself, I have friends who have Mental Health issues, and one of my friends is a Clinical Psychologist, but that is the extent of my knowledge of the subject. Basically – I am the last person you would put in charge of a situation where someone is suicidal because I am not qualified to deal with it – at least, given a choice between me and a group of Mental Health Professionals, I hope people would go with the Mental Health Professionals. And I would hope the Mental Health (and medical) Professionals would actually do their job.
Unfortunately, personal experience of finding myself on “Suicide Watch” via Twitter, on someone living in Cornwall (not very useful seeing as I live in Leicester), in the early hours of last Friday morning, tells me a totally different story.
The really heartbreaking thing is that the situation could have been stopped from getting so bad on Thursday afternoon (the fact that the situation could have been prevented from getting anywhere near that stage years ago is beside the point). All my friend's former GP had to do was to prescribe something called “PRN” when my friend asked them to. Instead the GP said they couldn't do it without speaking to my friend's Psychiatrist.
A side note is that my friend had asked his Mental Health Co-ordinator (aka Social Worker) to ask his GP not to prescribe a month's worth of tablets because my friend knew they were at risk of overdosing – the message was not passed on – with foreseeable consequences.
The funny thing is – before Thursday night/Friday morning my friend had kept trying to get rid of me because (according to them) “everybody else leaves me”. (Hmm, not exactly the best thing to say to me when you are in a vulnerable state – you get more attention not less.)
I feel really uncomfortable in situations where I don't know what on Earth I am supposed to be doing – and trying to keep someone alive long distance is definitely a situation where I hadn't got a clue. (Luckily a mixture of fear, determination, and adrenaline, kicked in – I wasn't going to let my friend die on my watch.) So I kept my friend talking and distracting them.
It was only when I went to bed on Friday night that I started to think that I could actually have made the situation a whole lot worse if I had said the wrong thing.
One good thing has come out of the situation though (apart from my friend not dying on me) – at least now my friend realises that I won't walk away when the going gets tough (I get more chatty instead).
It is a damning indictment of the Mental Health Services where my friend lives when someone like me is, in effect, left to do their job from so far away.
I could talk about the lack of resources as far as Mental Health Services are concerned – and many people would agree with me. However – from where I am sitting as I type this – that is not the only problem. The other problem is that Mental Health should be seen as a vocation instead of a career. There are too many Professionals in the Mental Health “Industry” who really are not suited to the work because they are not “people-oriented”. We are dealing with the lives of very vulnerable people here. Before you ask – no I wouldn't want to do the job of a Mental Health professional because I am honestly not cut out for it.
We need a properly resourced Mental Health Service – both in terms of financial resources and human resources.
You may think that me typing this blog post is inappropriate and I should leave it to people with personal experience of Mental Health Services (as in Service Users or Professionals) but I would say you are totally wrong. I have another friend who has Bipolar and I have seen her wearing a t-shirt with a very appropriate slogan on it “We all have Mental Health”. I understood this to mean that we all also have a responsibility to speak up for those who are unable to speak up for themselves.
|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).
|I am now going to let you into a secret about myself. In the event of you requiring to keep me quiet for any reason you will have to do one or more of the following;|
Give me something to read – I couldn't care less what it is (although I refuse to read “Horror” books – my imagination is screwed up enough thanks very much).
Supply me with food. If you can make any of my favourite foodstuffs you will have a friend for life.
Educate me – I love learning about things. Especially things which I have never known about before.
Have an unusual or interesting accent. This may not actually work as I may end up asking you questions so you have to speak more.
(Please note: The above do not have to be in any particular order.)
Yesterday afternoon found me in a place where I was subjected to all four. Funnily enough – it was one of my favourite foodstuffs (or – more precisely – the Brainiacs behind the shop which sells it) which made me decide to go there in the first place.
The “Foodie Festival” was held in a cafe which I had never been to before. Hidden down a side street near the Highcross Shopping centre in Leicester, “James” Cafe (or restaurant) was the venue for this extravaganza.
When it comes to puddings, sweets, desserts, toetjes, nagerechts, (or whatever you want to call them) my tastes run to the slightly more “exotic”. As in – it is impossible to get two of my favourite desserts anywhere in England, and another one is only available whenever there is a “Continental Market” in Leicester city centre. The desserts being “Chipolata Pudding” (a cross between Tutti-Frutti ice cream and a Blancmange – not a sausage in sight), “Dubbel Vla” (think “Devon Custard” and chocolate mousse in the same carton – pour it into a bowl so the substances are separate but mixed, hand me a spoon, and leave me in peace), and “Poffertjes” (Small Dutch Pancake type cakes – a bit like Profriteroles but without the cream inside – best served with sugar and stem ginger).
If you want to feed me on something “exotic” which you can get in Leicester – stand by to be dragged or taken to “Gelato Village” in St Martin's Square. Every time I walk into that shop they have a new flavour to add to my list of favourites.
As the name might suggest - “Gelato Village” sells Gelato (it also sells “Sorbetto”) which could be described as the Italian version of ice cream. I think it is better than ice cream – it has certainly got more “real” flavour than regular ice cream. This is because the Gelato is made from cream and whatever is in season at that particular moment – no additives, no colouring, no anything else nasty. Oh – and certainly no air - you ask for a cone or tub of Gelato and that is exactly what you get, a full tub or cone of delicious product.
The main ingredient you need to make authentic Italian Gelato (according to me at least) is an an authentic Italian recipe book. “Gelato Village” was started (and is run) by two of these, Daniele Taverna and Antonio De Vecchi are Italian – complete with the accent. They are both also very friendly. In fact, Daniele almost reminds me of Rene from “Allo, 'Allo” because of his cheerfulness.
They were both at the “Foodie Festival”.
The other companies at the Festival were a Cocktail bar, a wine maker based in Leicestershire, a beer making outfit, a company selling gin, someone showing how to make bread the proper way, a company selling pies, and someone with an interest in bees. (It was a pity that the Continental Market was on in the city centre as I think the Festival should have been somewhere more prominent – due to it celebrating Leicestershire companies and products.
Apart from the free samples on offer my favourite things were the talks and the reading material. I got educated about gin, wine, the history of pubs, the baking of bread – not forgetting Gelato.
I really hope there is another “Foodie Festival” in Leicester. I am all for being able to get “exotic” foodstuffs in Leicester but I am also passionate about home-grown companies and products getting a fair go at being showcased as well. I don't just mean food and drink – I mean companies producing all kinds of things.
|Sometimes I do things which even surprise me. Personally I hold one of the people who I work with responsible for the latest episode of “Inky's Adventures”. Well if they hadn't advertised the fact they were within a 50 mile radius of me (and I knew they were accessible by bus), I wouldn't have gone to find them.|
You may remember I do some blogging for a company called “Simple Solutions”??? This company is based down in Fleet (in Hampshire). Living in Leicester and being unable to drive makes getting to anywhere on the other side of London in a reasonable time-frame an expensive venture. This meant that – although I had spoken to both the people I work with on the telephone (as well as keeping in contact via Social Media and email) – I had never actually met either Roger or Lucy.
My latest adventure was to change that.
Roger and Lucy went to the “Emergency Services Show” at the NEC. Now – there was something I found puzzling about this. I had known that Roger had been in the Police (Inspector Nield – as he was then – was the reason I started working with Simple Solutions in the first place, after contacting him on Twitter), I also had had an idea that Lucy (his wife) had also been in the Police. However, I have never seen a Police Officer in a red uniform before (on the first photo of himself that he posted on either Twitter or Facebook from his time at the NEC – Roger was wearing a distinctly red t-shirt).
So – off I went to the NEC.
Between you and me I was actually expecting not to be allowed anywhere near the exhibition – due to one minor difference between myself and Roger. I have never worked for any Emergency Service. Until I had found Lucy I was actually convinced that I was going to get kicked out – more precisely – I was on the verge of abandoning my mission myself as I felt out of place.
Anyway – I eventually found Lucy standing at a stall (I really love surprising people by being where they least expect to find me – when I said “Hi Lucy” the smile on her face made my adventure worthwhile). She was wearing the same sort of t-shirt as Roger had been wearing on the photo – turned out that they were there as part of “Surrey Search And Rescue”. Hence the t-shirts.
However, there was also another very good point to their presence at the NEC. Roger is a Trustee of a charity which was set up by someone else with a connection to Simple Solutions. NESM (National Emergency Services Memorial) has been set up to raise money for a memorial to all the members of the Emergency Services in the UK who have been killed.
To find out more about the charity (and buy one of their badges) please visit - www.nesm.org.uk
You may know that I have family connections with both Leicestershire Police and the Rotterdam Police. I also have friends (including Roger and Lucy) who have been serving Police Officers in England. I even have one friend who still is (at time of typing this blog post) a serving Police Officer in Rotterdam – and I have lost count of the amount of serving and ex-Police Officers I follow on Twitter.
You don't need me to tell you that the Police (and the other Emergency Services) put their lives on the line every time they go to work. (If I hear about an incident involving a Police Officer in an area where I know one of my friends works I get worried – even if I have never met the Officer concerned.)
There needs to be some public form of recognition of the sacrifice made by the Officers who have lost their lives – apart from people lining the streets at the funerals.
Yes – I know my link with “NESM” can best be described as tenuous. However, one thing which cannot be described as half-hearted is my support for this idea.
I was just thinking – we have things like “Help For Heroes”, “Vulnerable Veterans”, etc, to help ex-Military people but is there anything to help ex-Police Officers who end up having to leave due to physical or mental health issues they sustained whilst on duty??? I know there is a charity to help their dependants – but what about the Officers themselves???
It is all very well setting up statues and Memorials for Officers who have lost their lives but I think we should also look after the ones who are forced out of the “Job” due to ill health as well.
One other thing before I finish this blog post. Not every Police Officer who dies is killed whilst on duty – some of them kill themselves as a result of the pressures and stress they face as part of their job. A Wise Owl of a serving Police Officer said - either on Twitter or on their personal blog – that they had had to deal with some horrific situations but were practically left to deal with the emotional and mental aftermath they faced on their own. Surely this cannot be allowed to happen???
One of the myths surrounding the Police is that “The Police Are The Public”. Sorry – in my eyes the Police are Superheroes – and should be treated as such.
|I don't know about you but – when I find out that one of my friends is affected by something – I am more likely to go out of my way to (1) learn about it and (2) attend events which either raise money for it or educate people about it.|
This might explain why I attended a “Charity Curry Evening” which was held to raise money for “Bipolar UK” and one other charity which I cannot remember the name of at this precise minute.
I had previously gone through my usual “Travelling in the Evening” checklist (luckily I knew that I would be going there in the light, and it was near a bus stop – if that wasn't the case I wouldn't have gone).
The Curry Evening itself was a great event. The food was delicious and the restaurant it was held in was perfect for someone like me (no cluttered furniture, lighting was adequate).
My attention was grabbed by a leaflet on the table which totally confused me. I don't know whether or not this was because I had come up with something completely different when it comes to asking one of my friends how they are feeling. It could also have been because I hate traffic lights.
This leaflet had a kind of scale on it – with red at both ends, then yellow, and green in the middle. The green bit was supposed to be the “steady” bit – whilst the two red bits were supposed to be the “Danger zone” bits. My problem with that was the fact both “Danger zone” bits have got very different outcomes. The “Mania” bit can be life-threatening without the person intending to delete him or herself from the planet – whilst the “Depression” bit can result in the person intentionally attempting to delete him or herself from the planet. So – unless you can see the scale in front of you – when someone has been trained to name a colour and they say “red” you need to find out which “sort” of red.
I know a few people with Bipolar and one of them has allowed me to experiment on him. Before you get worried – the experiment wasn't likely to harm him. In fact, he told me that it made it easier for him to tell me how he was feeling.
When he had told me a bit about how Bipolar affects him I came up with a rather basic scale so I could find out how he is. (The scale has even been added to recently.)
If you know me you will know I don't like complicated things (especially when I need the information to help with something) – you may also have realised that I have a rather “left-field” way of looking at situations.
So – I wanted to know how my friend was. And I wanted the information in a way I could understand. Forget using the proper terminology – miles too confusing. Instead break it down to the basics. Descriptions work best for me.
The scale which my friend and I now use is as follows;
“Scrape Off The Ceiling” - Hypomania or Mania.
“My friend's name” - Balanced.
“Sad” - Depressed
“Mixed” - Bouncing between “Scrape Off The Ceiling” and “Sad”
“Fell off the Bottom of the Scale” - Suicidal.
(That last one is a very recent addition to the scale.)
There is something which has always puzzled me about things like Mental Health, Disabilities, Cancer, and other “Socially Taboo” subjects regarding health. Why are things always made so complicated when it comes to talking about them??? Why do I never feel entirely comfortable using language which I understand most easily in conversations???
It is a bit like when I was at Schiphol Airport a few years ago. I was speaking to a lady behind a desk in Dutch (I wanted to get some information out of her about something) – then I told her I didn't understand something she had said. The word I used was English (I think it was “sorry?” - which has a slightly different translation in English and Dutch – it certainly wasn't “What?”, which would have been quite acceptable to her ears) – the lady immediately came back in English with “I thought you could speak Dutch”.
If we could find a way of talking about Mental and Physical Health in ways that we feel comfortable with (whilst not offending anybody who may have the conditions under discussion) life would be a lot easier. I suppose I am lucky in having people who I know I can talk to about their conditions in language I understand (as well as asking what must sometimes seem like the stupidest questions they have ever heard) without them causing me any physical damage as a result.
Just out of interest – instead of calling one of my illnesses “Heart Failure” (to me – if something fails it stops working altogether. Whilst my heart isn't operating at anywhere near full capacity the fact that I am typing this blog post indicates it must be working) I wish we could call it something like “Reduced Heart Function”.
Even when illnesses and health conditions seem complicated – surely the best way to deal with them is to keep it as simple as possible???
Or are we doomed to spend our lives having to get translations of “Medical” Terminology which we would otherwise have no Earthly use for???
I speak English and Dutch (I also have a GCSE in French and German). I do not speak “Doctor” or “Medical English”. Humans who attempt to talk to me in either of those languages are likely to be asked for a translation. I can still remember being told by a Dr in Glenfield hospital that I had told someone that I had an “ASD” (or some other three letter acronym) when I was a baby – this was news to me. When I asked for a translation it turned out that I had told them that I had had a hole in the heart – which was correct.
Using simple language might seem like a total waste of time to those who make their living using “Medical English” but – if you are anything like me – people end up feeling a lot more comfortable when they know exactly what is happening (and that their questions will be answered in a language they can understand.)
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.
I have been following a debate on Twitter with great interest. The debate is around the subject of whether or not somebody should be arrested for putting part of their training into action as part of their lawful duties.
To me – that sounds like telling me I cannot type letters as part of my duties as an Office Administrator, even though I have been trained in the correct way of typing them, I have certificates which will prove that I am trained in this, and I have 15 years experience of successfully doing it (as part of my last job), because the mere act of me sitting at a typewriter or laptop is illegal.
Yes, I know the above may sound ridiculously absurd but it is a scenario faced by some of the people I follow on Twitter – except it isn't typing letters that they have to worry about the legality of. These humans have to worry about whether or not they will be prosecuted for driving a motorised Baked Bean Can - with Blue Flashing Lights on its lid - in strict accordance with their training in the event of them having an accident.
Now – according to me any vehicle which comes with Blue Flashing Lights fitted as standard should be subject to the rules of the Highway Code the same as everybody else. Except when the aforementioned Blue Flashing Lights are in fact flashing and their Deafeners - Sirens - are going (I wish the UK Emergency Service Vehicles had the same sirens as the Dutch ones – my ears prefer the more musical Dutch version). This may have something to do with the fact that the Flashing Lights and Sirens might indicate that they are on their way to an emergency (or – in the case of the Police – trying to stop a suspect either before or after a crime).
I suppose I was a bit like some of you might be when I first read about Police Officers being worried about being prosecuted if something went wrong and someone got injured or killed during a pursuit. Then I remembered one Twittercop had given an extremely good example of how a Police Officer is trained to drive even without Blue Flashing Lights. SgtTCS (yes – the brains behind the “Don't Stream And Drive” campaign) had actually recorded audio of himself on his drive from home to work saying exactly what he was looking out for and what he did (more importantly why he did it as well). I would still have my reservations about the idea of sitting in a car when he was behind the wheel though – this might have something to do with another time when Constable Chaos live-streamed SgtTCS approaching a roundabout (I am surprised the car didn't end up on the roundabout).
The thing that really woke me up to the idea that the Police might have something to grumble about was reading an article (or a Blog Post) by Sgt Harry Tangye detailing what a Police Officer legally has to say during a pursuit. It is not a case of the officer deciding to put the “Blues and Twos” on, floor the accelerator, and just enjoy the ride – far from it. They have to demonstrate they are in full control of both themselves and the vehicle at all times. Sgt Tangye even stated his exact qualifications for what he was doing (as in – the fact he is something called a “T-PAC Driver”).
Call me crazy but – if a Police Officer is qualified to drive with “Blues and Twos”, at high speeds, and has a duty to preserve both their own life and that of other road users – surely the onus is on the suspect (and the rest of the road-using public) to ensure they don't get caught up in any chaos caused by the pursuit???
Let's just say I was amazed to learn that a Police Officer needs special training before they can get behind the steering wheel of a Landrover type vehicle – whilst civilians can walk into any dealership and drive off in one providing they have got a licence and insurance (not forgetting having paid for the vehicle and got the consent of the seller first).
If we expect the Police to keep us safe they should be allowed to do their job without fear of arrest when things go wrong – provided they can prove that they have acted both within the limits of the law and the limits of their training.
The same goes for Firearms Officers. As long as the armed Officer doesn't start randomly firing at anybody and everything they see – they should be allowed to use their discretion and training to inform their judgement and actions.
The Police are our Protectors – but sometimes they need to be protected from the vagaries of the complicated laws which they are paid to uphold.
The way it started was as follows. One child in the playground would decide they wanted to play a game of “Tig”, or “Poddy 1, 2, 3”, etc. Then they would realise they needed more children to join them so they would stretch their arms out on either side (at shoulder height), and start walking around the playground shouting “All in who wants to play...” and insert the name of the game they wished to play themselves. As other children started to join them the shout would get louder. Then came the decision as to who would be the first to be “it” - this was decided by the very clever means of “putting your feet in” (the children would form a circle and each put one foot into the middle). A rhyme was said as one child touched each foot in turn. When the rhyme finished the child whose foot was being touched was “out” and withdrew their foot. This carried on until there was one child left (he or she was deemed to be “it”) and the game would start. At my Primary school there was a word which was used whenever someone wanted a break from the game – unfortunately I cannot type it even phonetically because it is very close to what is now considered to be an extremely offensive racial term.
Why did I tell you all this???
From where I am standing we seem to be moving towards a kind of “society” which is more like a Primary School playground. Not only are the world's “Political Leaders” currently behaving like a pack of infants but everybody else seems to be following suit.
We also have bullying going on. Not just at school and work – the current bullying culture is becoming a saturating flood of nasty remarks, leaving different sections of the population out, advertising which gives false hopes of being included in a status group if you buy such and such a product, etc.
I must admit most people don't seem to realise the damage that the most innocuous-seeming form of bullying can do. The trouble is it is not a “Direct” attack on the victim per se. In fact, the victim doesn't even realise what is happening before it is too late. Before you ask – I am not talking about scams and phishing, etc. Instead I am talking about the role so-called “Celebrities” play in convincing people they need Plastic Surgery in order to feel good about themselves. Never mind the “Celebrities” - the fashion industry are also partially to blame.
When I was growing up and becoming “fashion Conscious” it was in the era of bra tops and cropped tops. (Thank Heaven those days are gone.) If anything is guaranteed to knock someone's confidence it is the thought of having an imperfect body on show. It doesn't matter if the scars originally saved your life – if they are ugly enough for you not to wear the latest “fashions” they are really ugly. Or at least that is how I was made to feel about mine.
Don't get me wrong – I am not totally against Plastic Surgery when it is deemed appropriate by qualified Medical Professionals – in the case of a major trauma which results in major disfigurement, for example. However, I look at some people today and think they are beautiful already (and some of them should really make an appointment with a Psychologist or Psychiatrist if they are really that unhappy about themselves).
There is too much pressure on us to conform to unrealistic expectations – or even conform to expectations which might be achievable for some of us but not all of us. (A clue – I could get seriously depressed whenever I see adverts for new models of cars. Why don't they have the same kind of adverts for buses???)
This is before we come to the idea of “Fake News” and “Alternative Facts”. This seems to be another thing lifted straight from the Primary School playground. In fact, it kind of reminds me of something else I remember from Primary School - “Am yer! I'm telling.” Or even that stupid little rhyme “I'm telling on you – you jumped in the lorry and you never said sorry”. (The fact that no lorries were involved in the preceding events was – apparently – beside the point.)
Now we come to the “Mainstream Media” who appear to be content with both dumbing everything down so you only need a very short attention span and jumping on the latest Bandwagon. In fact, I watched “Newswatch” on the BBC News Channel when the Grenfell tragedy was still a major news story. One of the viewers wrote in and accused the BBC (correctly in my view) of making a bad situation a lot worse by whipping up the simmering discontent to epic proportions – then reporting the results as though they were a valid news story.
I know – it is all very well me sitting at my laptop – typing away – having a go at people. However, I do try to do things in person as well. I may not be the world's prolific protestor (far from it) but – if there is a cause I can respect the aims of – I will give it my whole backing.
Finally – we come to the “Anonymity” issue. I admit this is more connected with Social Media than anything else. However, I do know of Bloggers who blog under a pseudonym for whatever reason. Please note – I am not one of them. I have always been open about giving you my real name (as well as certain other details about me).
Here is my opinion on the whole “Anonymity” issue. There should be a register somewhere where the real names of the holders of “Anonymous” accounts on Twitter (as well as a”Anonymous” Bloggers) are stored – whilst allowing the people themselves to remain anonymous if they so wish. This register could then be used to track down the people who abuse their right of “Anonymity” to make life difficult for other people.
One of these days I really hope someone manages to drag “Public” Life back out of the Primary School playground so we can have a grown up debate about the issues which really matter. I also hope that we can go back to the era of being able to watch Documentaries which actually educate us – instead of pushing the agenda of whoever is behind them.
We are in danger of losing the ability to think for ourselves – we have so many people who claim to be able to think for us. The only trouble with that is we are all individuals with our own experiences of life. For example, I can only give you a small taster of what it is like to be me at any given time. I type – you read my ramblings – you get a small glimpse of my life – however, you cannot possibly think that you fully know how my (sometimes twisted) brain works just from reading my blog or my output on Social Media. If you want to know exactly how my brain works you will need to supplement your reading diet with spending time with me and getting me to feel comfortable with you. You might be shocked by some of the difficulties which have shaped me into the patchwork which is typing this – you might be amazed by how I work around different challenges I face (or even the things I consider to be a challenge which you might be able to do without thinking about them).
All In Who Wants To Be Treated As An Adult!!!
|I must admit this is a kind of a cheat review. I had been to The Coffee Counter before but at that point I was more concerned about whether or not I was going to get a replacement bus pass than rating the cafe.|
There are some great places that you can walk past if you are not looking for them – and you will miss a gem.
The Coffee Counter is one such place. Tucked away on Bowling Green Street in Leicester (the last place I would expect to find a cafe) is an Olde Worlde type cafe. I mean that in the best possible way – the menu is short and sweet (as in you don't get hundreds of choices but what choices you do get are well-executed).
You also feel comfortable in the light, airy surroundings. The best thing about it is the owners appear to have gone for comfort over capacity. I have noticed a tendency with small cafes to try to cram as many customers as they can into the available space making it difficult for people like me to feel truly comfortable in it.
There are no worries about me getting around in this cafe. Not only that but I felt like I could have a private conversation with the friend I was with – even though it was an open plan layout.
The coffee is up to my usual high standards (as is the food).
A really nice touch is the logo appearing on the cups (I am a sucker for an interesting logo).
The Coffee Counter is really worth a visit.
|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”.