{"id":2847,"date":"2021-04-12T01:35:13","date_gmt":"2021-04-12T00:35:13","guid":{"rendered":"https:\/\/simonsdiary.co.uk\/wordpress\/?page_id=2847"},"modified":"2024-02-11T23:03:25","modified_gmt":"2024-02-11T23:03:25","slug":"autobiography-chapter-20","status":"publish","type":"page","link":"https:\/\/simonsdiary.co.uk\/wordpress\/autobiography-chapter-20\/","title":{"rendered":"Autobiography Chapter 20"},"content":{"rendered":"
\n
\n
\n
\n

SIMON MARK SMITH\u2019S AUTOBIOGRAPHY<\/h1>\n

By\u00a0Simon Mark Smith<\/a><\/span>\u00a0\u00a0<\/span>

<\/p>\n
\n
\n
\n

TO SEE OTHER CHAPTERS CLICK HERE<\/a><\/h4>\n

CHAPTER 20<\/h1>\n

<\/h2>\n

Part 1 – 1976 – Disability Issues<\/b><\/p>\n

\n

9th December 2014<\/b><\/p>\n

\n

My house is very cold right now, the heating\u2019s broken. I\u2019m sitting at my PC wearing a coat and hat, my feet feel like blocks of ice. Each morning, I take a cold shower but today the water was so cold it hurt. When I was a child, I would have gone into cold streams without a qualm, but nowadays I have to summon a good deal of courage before getting in that icy shower.<\/p>\n

\n

* * *<\/p>\n

\n

12th November 2014<\/b><\/p>\n

\n

I just watched a news item about deaf people in Uganda being treated as fools, forced into isolation and generally treated as objects of abuse. There are centres there that teach sign language, but often their parents resist sending them because they don\u2019t want to spend any money helping them. They see them as a waste.<\/p>\n

The TV programme\u2019s approach was overly sentimental, but the issue of the isolation and abuse that people with hearing impairments endure is a big problem all over the world, not just in Uganda.<\/p>\n

I have often thought that sign language should be part of the national school curriculum because it\u2019d be useful for conversing silently without the use of technology, let alone helping people with issues around hearing. Maybe the deaf community\u2019s biggest impediment is not so much their lack of hearing but the rest of society\u2019s not listening to their needs.<\/p>\n

As I watched this programme I was struck by how the lack of a solid foundation in the basics of their education meant they constantly failed to advance further. This often led to them being categorised as stupid, and this also rang a bell for me, especially as I\u2019ve been thinking about how this chapter will partly cover my first year at Wilson\u2019s.<\/p>\n

In my first few years at the school, I generally felt I was a bit of an idiot compared to my peers. As if I was missing some vital information, which I was. It was the basics, but back then I didn\u2019t know what I didn\u2019t know and hadn\u2019t grasped the importance of basics when it came to learning.<\/p>\n

\n

* * *<\/p>\n

\n

November 1976<\/b><\/p>\n

\n

I\u2019d often tell Mum I wasn\u2019t the worst kid in the class. \u201cThere\u2019s someone who gets lower marks than me.\u201d But then that kid left and from then on, the only way was up\u2026 or out!<\/p>\n

In year one at Wilson\u2019s, I didn\u2019t settle in well. The reality of being in a school that demanded hours of homework and an amount of self-discipline to learn what was requested meant I came face to face with my inadequacies from the start.<\/p>\n

I lacked self-discipline, so it was hard for me to make myself study. That characteristic is still there in me, although at times, I do tend to knuckle down. Still, I\u2019ll often buy a book and subconsciously believe just by buying it I will somehow magically take in its contents without actually having to read it. Fortunately, I\u2019ve recently found my phone will read books to me whilst I drive or do other things around the house, which means books are a part of my life again.<\/p>\n

Some people believe that in the future we\u2019ll find a way to insert information into our brain without having to study. However, the process of studying also enriches our minds. The way we reflect on the words we read and the further thoughts that pass through our minds, not just as a direct result of the words we read, but the gaps between them too, including our wandering thoughts, all have an effect.<\/p>\n

As I started writing notes for this chapter, I initially found it hard to remember what happened in the first year of being at Wilson\u2019s. It was as if only highlights got to remain in my memory. Yet, there must be many memories that remain dormant in our minds, as demonstrated when some get triggered from nowhere.<\/p>\n

If humans start to live for centuries how will their brains cope with all the memories they accumulate? It only seems logical to presume the sections of our cortex that retain memories are ultimately finite. Of course, memory doesn\u2019t work like a computer hard drive, where bits of information are stored in a physical form that takes up room. Memory as far as I can understand from watching a few YouTube videos, is partly the side effect of a series of synaptic connections among the neurons in our brains getting a pulse of electrical charge along with chemicals running through them. Even if we manage to remember much more than we think we do, we all know, over time a lot of what we experience is hard to recall. Sometimes I\u2019ve come across old videos of me doing something and even then, I have no memory of the event.<\/p>\n

Some people believe that forgetting occurs in long-term memory when the formerly strengthened synaptic connections among the neurons in a neural network become weakened, or when the activation of a new network is superimposed over an older one. In turn, this causes interference in the older memory. In other words, similar experiences may well \u201coverwrite\u201d the previous memory.<\/p>\n

So, if we get to live longer will we still only have the ability to recall a finite number of memories? In some ways, we create who we are by what we choose to recall, albeit subconsciously most of the time.<\/p>\n

Sorry if I\u2019m going on a bit about this but it\u2019s going to be relevant to what\u2019s coming up in some of the later chapters. Anyway, all of that was my excuse for not remembering much about this time in my life and writing about memory instead!<\/p>\n

Ironically there are times when I have far too much confidence in my ability to remember. Sometimes I have what I think is a great, unforgettable idea, and decide not to make a note about it, only to find a few minutes later I can\u2019t remember it. No doubt, when I was young this characteristic, coupled with a lack of desire to get down and study, led me to start falling behind. I was keenly aware I was one of the weaker students in my year. It wasn\u2019t so much about being stupid, but more a case of not feeling motivated. Still, I seemed to be moving from one world into another. At school, initially, I relied on feeling significant by trying to be tough, renegade, cheeky, and one of the lads. This, no doubt, was my Roundshaw identity making itself known within Wilson\u2019s, but on Roundshaw, I started to become even more of an outsider. I went to Wilson\u2019s and was therefore considered a bit of a clever clog.<\/p>\n

* * *<\/p>\n

\n

One evening, as I cycled home after school a boy from my junior school shoved his tennis racket handle through the spokes of my back wheel while shouting, \u201cAlright professor!\u201d My bike came to an abrupt stop. I got off and without hesitating punched him in the chest. He looked shocked and backed off. I stood there glaring at him for a comeback but instead, he just picked up his racket and walked away.<\/p>\n

I no longer fitted in on Roundshaw or at Wilson\u2019s, I was in a kind of no man\u2019s land<\/p>\n

* * *<\/p>\n

1976 – Wilson\u2019s School<\/b><\/p>\n

\n

Wilson\u2019s was built using distinctive yellow bricks. It had a central area in front of which was the assembly hall which protruded towards the road in front of it. The main area went up two floors, (three storeys), and in the centre, a dual zig-zag staircase surrounded by glass panels led to the floors above.<\/p>\n

To each side of the central block were two-storey wings. Beyond the one on the left, there was a swimming pool, gym and squash courts, and beyond the one on the right, a science department, and an Arts and Crafts block. To the rear and sides of the school were playing fields, tennis courts, AKA the smoking area, and a cadet building which included a rifle range.<\/p>\n

You may have noticed I don\u2019t usually try to describe things in detail. Apart from finding such passages boring when I have to read them, I also think if someone were to draw out what was described, the outcome would probably look nothing like the original object, not unless of course it was so detailed that it took a solicitor to draw it up. Anyway, in this instance I\u2019ve given a bit more detail because we\u2019ll be spending some time at Wilson\u2019s.<\/p>\n

The headmaster was Mr Friskney, who was mild-mannered with an edge of foreboding. The deputy headmaster was Mr Massey, who was a bulldog\/sergeant major type whom most people, including the staff, were scared of. Then there was the head of sports, Mr Sollis, who was short and bearded, strict but kind to those he liked. He\u2019d been at the school as a pupil too and would often tell of being a prefect and caning Michael Caine who was a pupil at the school too. Lastly, for now, there was Mrs Hearne, who had been a rally bike champion and now taught science.<\/p>\n

The routine for most days started with the register being taken at 8:45 by the form masters who\u2019d also deal with any issues concerning class members. After that, all the students would make their way to the assembly hall where once everyone was gathered, a hymn would be sung, followed by a short sermon and announcements, at which point we\u2019d vacate the hall and the lessons would begin. There\u2019d normally be two lesson periods, a short break, another lesson, and then lunch hour. In the afternoon there\u2019d be another load of lessons, the last of which tended to feel like it was taking forever. If you didn\u2019t have to attend a detention or weren\u2019t involved in any extra-curricular activities, you could make your way home.<\/p>\n

Wilsons was quite strict, punishments when I first started included being hit with the cane (a stick) or the slipper (a shoe), detention (being kept in after school ended), sides (filling A4\/Foolscap sheets of paper with writing), picking up waste around the school, suspension (being excluded temporarily from school) or getting expelled (being excluded from Wilson\u2019s forever). It\u2019s no wonder then that on the whole, the kids at Wilson\u2019s were quite well-behaved.<\/p>\n

* * *<\/p>\n

1976<\/b><\/p>\n

\n

Mum\u2019s mum, Ethel-May, had had a stroke and was set to live in Mum\u2019s sister\u2019s house. A few weeks after the initial stroke I got in from school and Mum greeted me at the top of the stairs.<\/p>\n

\u201cI\u2019ve got some bad news, Simon. Gran has had another stroke and might die, we have to go and see her right now.\u201d<\/p>\n

When we got to Gran\u2019s ward we gathered around her bed. This was when she called me over and put her hand on my face. I didn\u2019t understand what was going on but was very aware my cousins were watching me. If she was trying to say sorry it must have been very frustrating for her given I wasn\u2019t reacting accordingly.<\/p>\n

This is my last memory of her, as a few days later she died, and I didn\u2019t go to her funeral. It was as if a funeral wasn\u2019t the place to bring a child.<\/p>\n

In time a share of the money from her estate came to Mum who put it towards a flat in a small modern block called Sycamore Manor on Woodcote Road near Wallington High Street, about a mile away from Roundshaw.<\/p>\n

\n

* * *<\/p>\n

\n

7th December 2014 – When does someone stop being who they are?<\/b><\/p>\n

\n

When Gran had a stroke, she no longer communicated as she had done previously. She changed, but it was still her. The philosopher Gurdjieff went as far as saying our personality is everything that is not us. That our essence is defined by other aspects of who we are and exists from the moment of our creation. Yes, I know, that\u2019s a hard one to get your head around.<\/p>\n

A stroke takes away a chunk of what makes us who we are when it destroys a part of our brain, and yet, even if we\u2019re changed to the core, we are still us. It\u2019s as if we could change every atom of ourselves except that which is our essence, and we would still be ourselves.<\/p>\n

Once our brain has fully died, and our body lies decomposing, even then, though people say it\u2019s just the vessel through which we live, that shell is us, and yet not us too. The same could be said of the ashes left after being cremated or the bones below our headstone. They are fragments of us, but then in many ways, we only ever presented fragments of ourselves to others anyway.<\/p>\n

And when all that was physically us, but which isn\u2019t us too, finally disappears, we live on in the minds of those who brushed up against us when we lived, in the air that encircled us, in the words that dreamt of us and all the invisible consequences of our presence in the universe. We are not just our consciousness or that which makes up who we think we are, but also the thoughts that echo us throughout time. We may feel insignificant, but we are far more so than we can imagine.<\/p>\n

\n

* * *<\/p>\n

\n

1976 – The Calling<\/b><\/p>\n

\n

A few months after Gran died, I was in the living room listening to some music and heard Gran call my name. I thought at first it might have been something in the music that sounded similar, so I played back the same bit but there was nothing there. I went and asked Mum if she\u2019d called me, but she hadn\u2019t. I presumed I must have imagined it, but close to 40 years later I still recall the sound of her voice vividly.<\/p>\n

\n

* * *<\/p>\n

\n

1976 – Lost Sons, Cigarettes and Guns<\/b><\/p>\n

\n

I\u2019d sometimes bring a few friends from school back to the flat on Roundshaw during my first year at school. One day we tried smoking around the toilet and forgot to flush the cigarette away. When Mum got in, she asked me about it, and I denied all involvement. She smoked so didn\u2019t make much of it, and probably because it wasn\u2019t a big deal, I didn\u2019t try it again.<\/p>\n

Then there was the incident of me shooting the woman in the back with an air pistol whilst a friend from school begged me not to.\u00a0 <\/span>This was about the same time GLC Councillor Phil Bassett got to abuse me. All be it mildly compared to what many others go through.<\/p>\n

Bassett died on 2nd August 2005. He may have done lots of good in the world but I wonder how many other kids suffered at his hands. What he did to me was relatively minor, but I still visualise the look on the child\u2019s face I saw him with once in Sutton Library in my late teens. The kid was probably no more than seven, he had a very pale complexion and looked scared and lost. When his eyes caught mine, I wondered if he recognised some understanding in mine.<\/p>\n

\n

* * *<\/p>\n

\n

1976 – Watch it<\/b><\/p>\n

\n

The winter of 1976 was a dark time for me. The nights were drawing in, and instead of going home to do my homework, I would jump on a 233 bus to West Croydon, then head for the \u201cluxurious\u201d watch department in Alders of Croydon where I\u2019d salivate over digital watches. Eventually, I saved enough money to buy an LED one with a dark red face which would illuminate with numbers at the touch of a button. With the touch of another one, it would tell me the date. In those days this was a cool item to have and instead of being any good at my schoolwork, I thought being the first kid in the class to have a digital watch would make up for any academic failings.<\/p>\n

twenty-five years after getting it, seeing retro watches such as this came back into fashion, I got a new battery for my one and started wearing it again. For a couple of minutes, I felt a bit hip, but then a few days later it disappeared. I didn\u2019t know whether I\u2019d lost it or it had been stolen, but even now, I can visualise it clearly, and somewhere amongst the piles of sentimental rubbish I hoard is its turquoise velvet box, separated from its lost soul contents forever.<\/p>\n

\n

* * *<\/p>\n

\n

A Visit from the Reverend<\/b><\/p>\n

\n

One day Mr Jefferson, our Religious Education teacher and Reverend for the school turned up at my home. I invited him in, even though I had no idea why he\u2019d called around. He asked me how I was and how I was finding school then told me why he was there. It went something like this:<\/p>\n

\u201cThe reason I\u2019ve come here is we\u2019ve been discussing your application to go on the school trip to Germany and we feel it would be very impractical to have you on it because, when it came to going to the toilet or needing help doing other things, who would be responsible for helping you? It seems unfair to expect that of any of the other students or teachers for that matter to fulfil that role. Anyway, I do hope you understand and can accept this large bar of chocolate as a gesture of apology.\u201d<\/p>\n

He pulled out the chocolate which did seem to make a bit of an impact, also he was charm personified and on top of that, Mum had been telling me that she couldn\u2019t afford it anyway. So, I accepted it graciously.<\/p>\n

It wasn\u2019t till about ten years later that I saw it from a more political perspective. It was true I may have had more needs than others, but a better approach may have been to solve those issues without burdening people and excluding me.<\/p>\n

On the one hand, I had Phil Bassett using me to get press coverage to help raise his political profile, and on the other, my teachers\u2019 side-stepping issues that affected my inclusion in extracurricular activities. Just to let you know, I didn\u2019t let the latter go on, but more about that later.<\/p>\n

In my mid 20\u2019s I wrote a song called Grateful. Here are some of the words from it, well, the ones that relate to this point in my life:<\/p>\n

\n

Grateful – Written 28th October 1990<\/b><\/p>\n

\n

When I was a child in need of material things<\/p>\n

The local politician would his cameraman bring<\/p>\n

Him and the local charity would help me<\/p>\n

Help them get some free publicity<\/p>\n

And I was told that it was no one\u2019s fault<\/p>\n

And I was told to be grateful<\/p>\n

For anything they bought<\/p>\n

But I\u2019ve never seen the working class<\/p>\n

Licking out the rich kid\u2019s ass<\/p>\n

Or brushing the dust off the politician\u2019s coat<\/p>\n

For getting them their rightful vote<\/p>\n

So I don\u2019t think that I should be grateful<\/p>\n

For the way you make me feel disabled<\/p>\n

No, I don\u2019t think that I should be grateful<\/p>\n

For the way, you add \u201cdis\u201d to able<\/p>\n

\u2018Cause when it comes to understanding<\/p>\n

Here\u2019s the point of the story!\u00a0<\/i><\/p>\n

It takes more than a charity run<\/p>\n

When it comes to change<\/p>\n

It takes more than a program packed with fun<\/p>\n

When it comes to brotherly love<\/p>\n

It takes more than a sentimental song<\/p>\n

More than a million pounds<\/p>\n

That the last event wrung<\/p>\n

You see, Mr Bassett didn\u2019t feel for me, nor was he interested in getting to understand what my needs might be. One day when he decided my writing might not be very legible, he saw an opportunity to not only help me but help himself get some publicity out of the situation. I wasn\u2019t aware of the negative impacts of this then, but I certainly didn\u2019t feel comfortable about it. As I got into my 20s, I was able to put the pieces together and this is what I came up with.<\/p>\n

By using me to raise money for something that I might need, I was put into a category not far off from begging. Consequently, my rights as a member of society were affected because I became a second-class citizen whose fate lay in the hands of my peers and their feelings of sorrow for me. Years later this would be given a good strapline within the disability political community, \u2018Rights Not Charity\u2019.<\/p>\n

At first, this might seem unrealistic to some, but the more I thought about it, the more it made sense. What are our basic rights within an inclusive society, and why is it better to be inclusive? There are many things people are asked to raise money for that should be paid for by taxpayers, and obviously, there are many things that shouldn\u2019t. In the US, health care is not seen as a right, while in the UK and much of Europe it is. Even so, sometimes though, some people\u2019s lives are left to hang in the balance of others who dress up as rabbits and run many miles to raise money for some specialised life-saving piece of equipment. The issue of rights is a complicated matter, but often the consensus that surrounds their acceptance comes from a place of compassion as much as it does political pragmatism. During the early 1900s, the West looked at the revolutions occurring around the world and thought it best to head them off in their own lands by legislating for more rights and care for the wider community before they took it forcefully.<\/p>\n

\n

* * *<\/p>\n

\n

1976 – Dislocated<\/b><\/p>\n

\n

Whether I consciously recognised this or not I started to become displaced in certain aspects of my life. Displaced from my peers on Roundshaw, not really included in Wilson\u2019s, and publicly advertised as being a second-class citizen within the local media and wider community. Unable to perform well academically at that point, I think I felt I had to get my feelings of significance from appearing clever to one set of people, tough to another, and as normal as possible whenever I could.<\/p>\n

So, Mr Bassett got his free publicity, I got a typewriter which I never used, and a load of people got to feel good out of it. I\u2019m not criticising them because they were acting out of the kindness of their hearts, but the politicians and businesses who use people to get cheap publicity, I don\u2019t have much time for them. As Ophelia said in Shakespeare\u2019s Hamlet:<\/p>\n

\u201cTake these again; for to the noble mind.<\/p>\n

Rich gifts wax poor when givers prove unkind.\u201d<\/p>\n

\n

* * *<\/p>\n

\n

Part 2 – Angela<\/b><\/p>\n

\n

March 2014<\/b><\/p>\n

\n

I find my way to St George\u2019s Hospital. From my car I see Stephen standing near a window a couple of floors up. It\u2019s night, and his silhouette is surrounded by an orange wall behind him. He\u2019s on the phone to me, guiding me in. He comes down to greet me and then shows me to the ward where Mum is lying, her head slumped to one side. We both call out to her, but there\u2019s no response.<\/p>\n

\n

* * *<\/p>\n

\n

18th March 2014<\/b><\/p>\n

\n

Mum is asleep still and her breathing is laboured. The doctor wants to talk with us outside of the room in case she can hear us.<\/p>\n

\u201cIt seems your mother has suffered an amount of hypoxia.\u201d<\/p>\n

\u201cWhat\u2019s that?\u201d I ask.<\/p>\n

\u201cIt\u2019s a lack of oxygen that affects the brain. She\u2019s certainly got some damage to the brain, but we can\u2019t tell until we do some scans and even with them, we won\u2019t be able to tell the full extent of the damage until she wakes up. I have done some tests on her and they indicate that the level of damage is severe, it\u2019s not the worst but it\u2019s still bad. I want to show you something, come with me.\u201d<\/p>\n

We follow him back to the room where he digs his knuckle into the centre of Mum\u2019s sternum, as he does this, she brings her arms up, back of wrists first, to where he\u2019s pushing.<\/p>\n

He stops and says, \u201cThat response indicates more of the brain is working than if her arms had straightened and she had arched her back.\u201d<\/p>\n

Steve asks, \u201cSo is there any hope of recovery doctor?\u201d<\/p>\n

The doctor pauses a second, his eyebrows raise and his lips purse, \u201cWe really can\u2019t tell at this point. Let\u2019s do the scans and see how things go over the next few days.\u201d<\/p>\n

Afterwards, we sit in the room talking as if she is asleep. Stephen says, \u201cMum, wake up, it\u2019s Stephen, I\u2019ve come all the way over from Australia. Mum? Mum!\u201d<\/p>\n

But she doesn\u2019t respond.<\/p>\n

In intensive care, each patient has a dedicated nurse to themselves 24 hours a day. Steve and I sleep on the floor through the night and start to take turns to be there. I do the night shifts. It all feels a bit surreal driving back to Mum\u2019s house to sleep in the morning, then back in the evening, with some food to snack on through the night.<\/p>\n

\n

* * *<\/p>\n

\n

1976 – The Writing\u2019s on the Wall<\/b><\/p>\n

\n

The night before we moved from Roundshaw to the new flat I wrote a message on the wall next to my bed to the new occupants. When I got to the new flat after school mum was really angry because she felt very let down when her sister had seen the writing. I guess that\u2019s when I learned that people tend not to appreciate seeing the writing on the wall after all. I never really got into graffiti, maybe it was a result of Mum\u2019s reaction to this little foray into it.<\/p>\n

\n

* * *<\/p>\n

\n

1976 – The New Flat<\/b><\/p>\n

\n

The new flat was on the second floor of a block on the main road. Once entered it had an L-shaped hallway. On the left was a bathroom, then on the longer bit of the L shape were entrances to two bedrooms on the left, opposite which was the kitchen and at the end was a large lounge. This was our new stage set for the next few years.<\/p>\n

\n

* * *<\/p>\n

\n

March 2014<\/b><\/p>\n

\n

After a few days of doing shifts in Mum\u2019s hospital room, I decided to go back to Eastbourne to get back some semblance of reality. Typically, the doctor called us in for a meeting to go over Mum\u2019s condition. I rushed back up but managed to get caught in traffic so came in at the end of the meeting. Stephen was very upset, as too was the doctor, which was a bit strange. I could pretty much tell what had been said, however, the doctor kindly went over it again for me.<\/p>\n

The upshot was that most of Mum\u2019s higher brain areas had died and swollen, all that was left was the part that kept her alive, the stem. He then showed me the brain scans along with a diagram that showed what was still functioning. He added that the scans are not very precise so more of the brain may be functioning than might appear in the scans. However, we should prepare ourselves for the worst.<\/p>\n

\u201cWhat happens next?\u201d I ask.<\/p>\n

\u201cWell, we\u2019ll take off some of the support systems and see what happens.\u201d<\/p>\n

I look at him and ask, \u201cHow long do you think she\u2019ll have?\u201d<\/p>\n

\u201cIt\u2019s difficult to say, a few days, maybe a week, ultimately one has to hope that she\u2019ll get a respiratory infection such as pneumonia and gently, painlessly slip away. They used to call pneumonia the old man\u2019s friend.\u201d<\/p>\n

I\u2019m curious about her state of mind, \u201cDo you think she has any consciousness?\u201d<\/p>\n

The doctor pauses, then says, \u201cYes, and no, not as she did before, but something, pre-words, probably no memories, no ability to make sense of her surroundings. More of a reactional state living in the moment, but not in any way that we would.\u201d<\/p>\n

I interject, \u201cA kind of primaeval consciousness?\u201d<\/p>\n

\u201cMaybe, it\u2019s hard to know.\u201d<\/p>\n

Steve joins in, \u201cWill she stay in the intensive care ward?\u201d<\/p>\n

\u201cFor a day or so, then we\u2019ll move her to another one where she\u2019ll be kept as comfortable as we possibly can.\u201d<\/p>\n

\n

* * *<\/p>\n

\n

\n

So, Steve and I continued our shifts. I would look into her eyes when she woke up, but even though there was a feeling that her eyes would lock on to mine if I moved my head off centre her eyes didn\u2019t follow. It was still Mum but she had changed. She would make noises in her sleep with her voice, but they weren\u2019t words, more like burps and groans and when the nurses cleared the back of her throat with a tube, she would clench her teeth and move her head away. I think we all felt that whatever was left of her could still suffer, so, we wanted her last days to be as pain-free as possible. As it turned out though, these weren\u2019t quite her last days.<\/p>\n

\n

* * *<\/p>\n

\n

March 2014 – One Side<\/b><\/p>\n

\n

One of Mum\u2019s friends was very involved during this time, but when I went to hug her goodbye, she didn\u2019t want to. I think I know why. At times in the past when Mum and I had fallen out as adults, Mum had confided in this friend and now she was judging me. But that was only one side of the story.<\/p>\n

\n

* * *<\/p>\n

\n

March 2014 – The Walking Dead<\/b><\/p>\n

\n

One night I was sitting next to Mum in the hospital and watching \u201cThe Walking Dead\u201d on my iPad when I realised the sounds coming from Mum were a bit like the zombies in the program. I half expected to wake up to Mum biting me.<\/p>\n

\n

* * *<\/p>\n

\n

October 1976 – Cross Country<\/b><\/p>\n

\n

Our first sports field session at school was to send us out on a cross-country run. I think I got about half a mile when a fat kid, with a purple face, told me he was having an asthma attack. By this point, I too was having an asthma attack, and I don\u2019t even have asthma. It was then that I realised my running career was over, so I limped back to the school with him.<\/p>\n

To some, it may have appeared our speedy return was due to us being exceptionally fast cross-country runners, so no wonder we looked so out of breath. However, given our teachers didn\u2019t ask either of us to join the cross-country team I think they had a handle on the reality of the situation.<\/p>\n

\n

* * *<\/p>\n

\n

November 1976<\/b><\/p>\n

\n

\u201cI want a word with you,\u201d Mum says to me.<\/p>\n

\u201cWhat have I done!!!\u201d<\/p>\n

\u201cWhat haven\u2019t you done, more like it.\u201d<\/p>\n

\u201cWhat do you mean?\u201d (I\u2019ve always hated the way some people like to keep the suspense up when it comes to persecution.)<\/p>\n

\u201cYou know!\u201d<\/p>\n

My eyes look to the left and I shake my head pleading ignorance.<\/p>\n

\u201cHow about homework, schoolwork, behaving well, not being disruptive, not showing off? I\u2019ve just been to see your teachers and not one of them had a good thing to say about you. I couldn\u2019t be more ashamed.\u201d<\/p>\n

My conscious mind probably thought, \u201cSo what\u201d, but deep down I didn\u2019t want to be a failure.<\/p>\n

* * *<\/p>\n

March 2014<\/b><\/p>\n

\n

Once we thought that Mum would only last a few days, we kept a 24-hour vigil and for a week life was put on hold. Steve only had a month till he\u2019d have to return to Australia and during this time we had to start sorting things out, such as Mum\u2019s house. This may have appeared as a bit too pre-emptive, but we had to be practical.<\/p>\n

As we spoke to the neighbours, we got an idea of what had happened from those who were there when she collapsed, and as we pieced this together, I found myself wondering more and more about the last moments of her previous self.<\/p>\n

She knew something was wrong, and probably felt a bit scared, she could feel a pain in her neck and she felt herself getting dizzy, enough to tell her friend that she was \u201cgoing to…\u201d I presume she was going to say the word, \u201cfaint\u201d and at that point lost consciousness. Between then and her brain not getting enough oxygen to survive, a window of anywhere between five and forty-five minutes passed. During that time, she may have experienced a few moments of consciousness. At one point she seemed to sigh; was this just air being expelled or was it her reacting to the situation? Did she go through a near-death experience which may be a byproduct of a lack of oxygen? Did she have an out-of-body experience? Did she feel herself being brought back and want to go back to the feeling of being absorbed into the light of love? Did she become aware of something going on but was trapped in a state of paralysis? Or maybe she didn\u2019t experience anything from the moment she collapsed until she became pretty much brain-dead. These thoughts haunted me, but why, what good does it do to go over possibilities that are never likely to be confirmed one way or another?<\/p>\n

We focus so much on people\u2019s last thoughts, yet, given we may not have any more consciousness beyond them, how important are they? We hate to think of our loved ones suffering or feeling fear. Yet in life, they may well have felt similar feelings many times. It\u2019s the realisation that this is it, that\u2019s partly what haunts us because that same thought fills most of us with fear too.<\/p>\n

Some people say they experienced an out-of-body existence as they nearly died. Is that real? Some people believe it is. Was Mum outside of her body when we were waiting for her to die? If there is a soul, does it take its memories with it? If not, did Mum become more of her essential self when only her brain stem survived?<\/p>\n

Sitting in the hospital watching her exist as the same person but someone else I couldn\u2019t help but question what we are.<\/p>\n

A week passed and I decided to go back to Eastbourne for a few days. Sure enough, the next day I got a call to say Mum might pass away in the next few hours. I rushed up the motorway and got there in record time, only to find that her breathing had calmed down and she\u2019d stabilised.<\/p>\n

A few days later her skin suddenly looked young, there were no wrinkles on her face. I had read that sometimes just before people die they tend to get a new lease of life, so I couldn\u2019t help but think she was just days away from dying, but a few days passed, and she kept chugging along. That heart of hers, the one that stopped a few weeks before, beat on strongly. That body that had knocked on death\u2019s door, kept going. No infections took hold, she just plodded on.<\/p>\n

We started to think she might have to go into a long-term care home and enquired about stopping her feeding, but the hospital didn\u2019t want to do that. We all agreed that Mum wouldn\u2019t want to carry on living as she was, but there was nothing we could do but wait.<\/p>\n

Steve and I cleared out the house, well actually Steve cleared most of it, I just ferried some of it for storage at my place and slowly we realised we were wishing that she would pass away soon.<\/p>\n

I went back home for a few days and that night at about 4 a.m. the phone rang. I knew straight away it would be the hospital telling me that Mum\u2019s condition had deteriorated, and it was. I called Steve because he was nearer. He got up and started driving at top speed to the hospital. Typically, the police stopped him, so he told them what was going on. They then let him go on his way but followed him to the hospital to check he was telling the truth.<\/p>\n

When he got there the nurse nodded at him slightly and said Mum had already passed away. We wondered whether Mum had passed away before they made the call because her hair was brushed, and Steve had only taken 20 minutes to get there.<\/p>\n

We hadn\u2019t wanted Mum to die alone, but for me, she died when she collapsed in the Spiritualist Church, and at that point, she wasn\u2019t alone, in fact being where she was couldn\u2019t have been more apt in some ways.<\/p>\n

Here it was, the moment had come, and Mum was no longer alive. She was 74, the same age as her mother when she died, the same age as John when he passed away, and the same age as Mr Bassett when he croaked. She died on April Fools\u2019 Day, like some dark joke, and later when I went through her things it was the same date her driving licence expired. All these things connected in my mind, they meant nothing, but I couldn\u2019t help but connect the dots.<\/p>\n

\n

* * *<\/p>\n

\n

April 2014 – Practicalities<\/b><\/p>\n

\n

That bit after someone dies, when you\u2019re dealing with officialdom and getting everything ready, it kind of acts as a buffer. We all thought it was funny that both the solicitors and the funeral directors were called \u201cA Smith\u201d which was Mum\u2019s name too. We prepared the funeral booklet, including a picture of Mum looking like a sexy film star when she was in her 20s. Then on the day of the funeral, I found myself sitting in the back of a limousine making small talk with her sister and Stephen. As the journey progressed, I watched the hooves of the horses drawing the carriage carrying Mum\u2019s body, glistening in the sunlight, and thought \u201cMum would have liked this.\u201d I felt tearful for a moment, but a funeral isn\u2019t the best place to grieve. It\u2019s like a show, and for this one, there was a large audience. As we approached the crematorium, a crowd had gathered outside, so, getting out of the car in floods of tears wasn\u2019t going to happen even if I had wanted to cry.<\/p>\n

It\u2019s all very choreographed, these crematoriums work to a strict timetable, so in we went, dead on time. The place filled up so much that many people had to stand. The music we chose played without jumping (I had dreaded the CDs would have errors on them); after a long intro to Ave Maria, I looked around to check if the singer we\u2019d booked was there, and just at the moment when I thought she wasn\u2019t, she started to sing.<\/p>\n

When we all sang Morning has Broken<\/i>, there was a hiccup when a verse unexpectedly repeated and nobody but me sang along, but otherwise, it all went to plan. Still, the whole event felt like a performance, constantly on show, from throwing the earth in the grave without falling in, to the greeting, meeting, and eating, it\u2019s not a time for grieving or for saying goodbye even. That all takes place for a long time after.<\/p>\n

We had gone to see Mum\u2019s body in the funeral home a few times before the funeral, but something had occurred in the embalming process that caused Mum\u2019s neck to expand, and it didn\u2019t look like her. We also peeped through the curtains at the body next door, where an Indian man was laid out. I couldn\u2019t help but wonder if Mum was chatting to him and inviting him to her funeral.<\/p>\n

Steve and I both wrote eulogies which were read at the funeral by Mum\u2019s brother-in-law, Edward, who\u2019s a priest, as well as her cousin Michael, who\u2019s also a vicar. I\u2019ll include copies of these at the end of the chapter.<\/p>\n

I wondered if Mum would have preferred a spiritualist service, and there were some people I tried to get to come who couldn\u2019t make it, but overall, it was a fitting send-off. But who is a funeral for anyway?<\/p>\n

\n

* * *<\/p>\n

\n

Dream 1<\/b><\/p>\n

\n

Mum is in front of me, part of her face has decomposed. I tell her she is going to die and she tells me she doesn\u2019t want to.<\/p>\n

* * *<\/p>\n

Dream 2<\/b><\/p>\n

\n

I start crying because Mum has died and I feel like I will never stop. I wake up in real life and touch my eyes to see if there are any tears, but my eyes are dry.<\/p>\n

* * *<\/p>\n

\n

1969 – Gran\u2019s House<\/b><\/p>\n

\n

I get into bed, the sheets are cold, but I quite like that. The room is dark but the door is open slightly. Mum pops her head around the door and says, \u201cGood night, I love you.\u201d<\/p>\n

\n

* * *<\/p>\n

\n

Eulogies:<\/b><\/p>\n

\n

Simon\u2019s words for Mum<\/b><\/p>\n

\n

Every goodbye echoes every goodbye. At first, when we say goodbye to those we love, we may be filled with sorrow and fear, but as we get older, we learn through experience that as painful as a goodbye can feel, somewhere behind it remains the gift of knowing.<\/p>\n

From the beginning of our relationship, there were constant moments of separation. My mother would kiss me and go through a goodnight routine when I was a child. She would let me do a roly-poly on the bed, do some butterfly kisses on my face, Eskimo kisses on my nose, then switch off the light, and pull the door to. I would call out, \u201cDon\u2019t turn the hall light off mummy\u201d, and she would say, \u201cI won\u2019t darling, now go to sleep\u201d. Between the thousands of hellos and goodbyes, I came to know my mother and carry her in my mind and heart.<\/p>\n

As Steve and I saw our mum for the last time ever, the final moments of experiencing her in this world were brought to a close through that process. But the shadows of those who have departed illuminate our inner world. Mum has passed away, but she is alive still in all of us who knew her. Very alive, not just in our imagination and dreams but in our actions too.<\/p>\n

I first met Mum when she was 25, I don\u2019t remember much of those first few years, but I recall her clearly when she was about 28 to 29. She had an extremely pretty face, was proud of her looks and even at 74, her skin wasn\u2019t that of an elderly lady. She had a youthful quality about her, both in her appearance and her demeanour. In many ways, she was quite child-like and sometimes a bit na\u00efve, and consequently she\u2019d often ended up on the wrong end of advantage takers. Because of this we\u2019d admonish her, and she would laugh sheepishly but at the same time, it was possible to see the disappointment, not just in herself but in humanity too.<\/p>\n

There are as many Angelas, as the people who interacted with her, and then all the ones she knew in herself. To most of us though Mum had some constant traits. Her compassion, sensitivity, affection, love of animals, a desire to explore life and her artistic abilities, gregariousness, to love and be loved, and at times her ability to carry on in the face of great difficulty.<\/p>\n

When she became pregnant with me, she didn\u2019t give me away as so many did in those days. Instead, she put up with the stigma of not only having a child out of wedlock but also a disabled child who, on top of all this, looked a bit foreign. Her compassion and love for me saved me from God knows what. She instinctively, or through empathy, connected with me and understood that it was not okay to abandon me just to keep up appearances. To her, other things were more important, namely the feelings of those she cared about, to be kind not only to her kin, her kind but also to humankind.<\/p>\n

My version of Mum as a mother was very different to Stephen\u2019s, I have often felt like a witness to Mum\u2019s life. She was much younger when we met, and we existed in a different world then. The mum I got to know suffered at times, struggled and survived through some difficult moments. But she had many friends too and our life was often a very sociable one. Many of those people we interacted with are here today and will remember those times well. They too will know that Mum was a bit of a paradox, as most of us are. She was meek, and sometimes a bit too scared of confrontation, but she would fight for what she believed in, and though she often appeared as if she might not cope, she did. To be a single mum must have been very hard at times and while she yearned for love she still put me first and was lonely at times because of that.<\/p>\n

When she met John and they married, her life entered a new phase, and she experienced a different and more stable world for a long time. Most of it was good but John\u2019s illness presented another period of difficulty. To watch one\u2019s partner fade away must be one of life\u2019s more painful challenges.<\/p>\n

Recently though, the next part of her life seemed to be taking shape. She was planning on moving to Eastbourne where I thought she would have at least another ten years or more. So, while her collapse hopefully saved her from any long-term suffering or having to come to terms with a terminal condition, I still felt very sad for her.<\/p>\n

Many of us here today carry with us memories of my mum that can\u2019t be summed up in a few sentences. But we can say her life was an interesting one, her personality was intricate, and while only God can know what the long-term effects of her presence in this world will be, we can say that she lived, she loved, she touched many of us, she felt deeply and laughed frequently, and all of us will carry a part of her with us way into the future. So, when we say goodbye today, it may be with tears, but it will also be with smiles and happy memories. And finally, for all that she did for me, I want to say, \u201cThank you and I love you.\u201d<\/p>\n

The word Goodbye derives from the phrase God Be with you.<\/p>\n

Goodbye Mum, goodbye, Angela.<\/p>\n

\n

* * *<\/p>\n

\n

Stephen\u2019s Eulogy:<\/b><\/p>\n

\n

Mum Funeral Reading 15th April 2014 \u2013 By Stephen Hill (Son)<\/p>\n

My mum was an amazing and generous lady. She did not have a bad bone in her body, always telling funny stories and forever laughing. She brought me up to be the person I am today, she taught me to always be polite, friendly, grateful, hardworking and, most importantly, how to waste lots of money on stuff I don\u2019t really need and then store it away for the next ten years. I wasn\u2019t sure who was worst between us, but after sorting through my mum\u2019s worldly possessions last week I think my Mum definitely won 1st prize. Well done Mum!<\/p>\n

She was not just a great mum to both Simon and myself, she was also a loving mother-in-law, daughter, daughter-in-law, sister, sister-in-law, grandma, aunt, cousin, niece and of course a loving and devoted wife to my late dad John Anthony Hill, who sadly passed away last year. I think everyone who is here today will also agree that she was a great friend who would put herself out for anyone. Plus she was also good for a cheap haircut here and there.<\/p>\n

We have been overwhelmed by the cards and phone calls that have been received since my mother was admitted to hospital four weeks ago. She undoubtedly has some wonderful friends and family who will miss her dearly.<\/p>\n

It was just over one month ago when I last spoke to my mother on a video call, she spoke about how excited she was about her move to Eastbourne and how she was planning a few trips abroad in the next 12 months which included another trip to see myself and my wife Sarah in Melbourne. She had so much to look forward to, but tragically it was not meant to be.<\/p>\n

I have so many fond memories of my mum, but my most recent happy memories are from her trip to Melbourne in December. I am so thankful Sarah and I got to spend one last Christmas with Mum, she had a great time. I even cooked the turkey on Christmas Day, which Mum was pleasantly surprised to see, as she\u2019d never seen me cook before. She really let her hair down, we even got her singing karaoke in our living room on Christmas Day, she definitely would have given Robbie Williams a run for his money with her cover of Angels.<\/p>\n

The highlight of her trip to Australia was spending the New Year on a boat cruising around the Great Barrier Reef where she got to see dolphins and whales. By the end of the trip, she had made friends with pretty much all 100 passengers, including the captain. We all know how my mum liked to talk to anyone and everyone, a quality that made my mum the wonderful person she was.<\/p>\n

Although the last four weeks have been the most upsetting time of my life, I am still very thankful that my mother did not have to go through a long, painful illness, and it gives me great comfort knowing her last memories were happy ones. I will truly miss my mum more than words can describe and will always keep her close to my heart till the day we meet again.<\/p>\n

May my dear Mum and Dad both rest in peace together.<\/p>\n

\n

* * *<\/p>\n

\n<\/div>\n<\/article>\n<\/div>\n

<\/main><\/div>\n

Chapter 21<\/a><\/p>\n

<\/div>\n
\n
\n
\n

To see other chapters click here<\/a><\/p>\n<\/div>\n<\/article>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

SIMON MARK SMITH\u2019S AUTOBIOGRAPHY By\u00a0Simon Mark Smith\u00a0\u00a015\u00a0Feb\u00a02017 TO SEE OTHER CHAPTERS CLICK HERE CHAPTER 20 Part 1 – 1976 – Disability Issues 9th December 2014 My house is very cold right now, the heating\u2019s broken. I\u2019m sitting at my PC wearing a coat and hat, my feet feel like blocks of ice. Each morning, I…<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"cybocfi_hide_featured_image":"","footnotes":""},"class_list":["post-2847","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/simonsdiary.co.uk\/wordpress\/wp-json\/wp\/v2\/pages\/2847","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/simonsdiary.co.uk\/wordpress\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/simonsdiary.co.uk\/wordpress\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/simonsdiary.co.uk\/wordpress\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/simonsdiary.co.uk\/wordpress\/wp-json\/wp\/v2\/comments?post=2847"}],"version-history":[{"count":22,"href":"https:\/\/simonsdiary.co.uk\/wordpress\/wp-json\/wp\/v2\/pages\/2847\/revisions"}],"predecessor-version":[{"id":6989,"href":"https:\/\/simonsdiary.co.uk\/wordpress\/wp-json\/wp\/v2\/pages\/2847\/revisions\/6989"}],"wp:attachment":[{"href":"https:\/\/simonsdiary.co.uk\/wordpress\/wp-json\/wp\/v2\/media?parent=2847"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}