life

Brief Breakfasts Are Sometimes Best

Breakfast was quite brief this morning: my PA Abdul arrived at about half seven, made my coffee and toast, helped me with my shoes and socks, did another couple of things and got on his way. Obviously, things usually take a bit longer, but today Abdul had somewhere else to get to so it was quick and efficient. Frankly, that’s fine by me: I’m now fed, caffeinated and ready for the day; after writing this I’ll get in my powerchair and set off to continue exploring the world’s greatest city. Then, this evening, I’ll get back home and wait for Abdul to arrive again to cook dinner. That’s just the way I like it.

The thing is, there was a time when this would have been unimaginable. Growing up, I tended to assume that I would always need constant help; either that or I would always live at home with my parents like a perpetual adolescent. The notion that I would one day have my own flat in South London, the ability to go in and out and roam around as I pleased, choosing what I wanted to eat and where I want to go, would have seemed absurd – even scary. The assumption was that I’d be unable to do anything without the help of my parents or an able-bodied person. Fortunately, my experience living on campus at university, then moving down to live with Lyn in 2010, put an end to that.

However, many disabled people still seem to think that way. There seems to be a residual assumption, especially among people with CP, that they need a personal assistant constantly with them, and that they wouldn’t be able to function without twelve or even twenty-four hour help. Although there is an element of ‘to each their own’ to this, frankly I fail to see how anyone can live like that. These days, I enjoy being by myself and doing my own thing: in my chair I can go where I want; if I fancy a coffee I’ll pop into Costa or Starbuck’s; when I feel like lunch I’ll grab a wrap; if I need to communicate with anyone I’ll just tap it into my Ipad. Inaccessible shops and tube stations aside, I have more or less the same abilities as any other citizen. Then, in the evenings I return home and wait for my PA to arrive to cook dinner.

I think this is a healthy way to go about things. Obviously, there will be periods when I need far more assistance: when I go abroad I naturally go with someone like John. Whereas at home I can quite easily feed myself using my Neater Eater, it would be hard to carry such equipment across places like India or Morocco. The same goes for my powerchair, which is why when I go abroad I take my manual chair, and therefore require far more support. Besides, it’s always far nicer to travel with a friend.

Here at home though, living in my own flat which I can go in and out of at will, I don’t see why I would need anyone here with me more than they currently are. If I had someone with me for eight or twelve hours a day, following me around on my trundles across the metropolis, I daresay things would soon become untenable. Thus this is the way I like things; and I know that, when I need more help, it is only a message over Facebook away. I firmly believe that is the healthiest attitude to have, and that thinking you need constant support and a personal assistant 24/7 ultimately traps people with conditions like Cerebral Palsy in a form of perpetual childhood.

I find myself wishing that I could somehow go back and tell my younger self how things would turn out: how, while mum’s dinners might be both delicious and dependable, it would one day be far cooler to do my own shopping before asking my PA to cook what I fancy. That, rather than being the hostile, frightening place I once assumed it to be, the world was crammed with more wonder and excitement than I could ever have imagined. That is one of the reasons why I blog: if there are any young disabled people out there as timid as I once was, I want to tell them that, once all the basics are in order, they are ultimately just as able as anyone else.

Absence Anxiety

I have had a bit of a strange day so far. Physically, it has actually been quite good: a nice, fresh, jam-filled breakfast followed by an interesting trundle to Lewisham. However, it was also one of those days when I have felt rather edgy about my absences. That is to say, throughout the morning I repeatedly thought I could feel one was about to happen, only to be fine. I’m not sure whether I imagine such feelings or not, but it makes me very nervous. I don’t suppose many other people will know what it feels like to suddenly get a dreadful sensation that you might to be about to loose all your sense of spatial awareness, and then come to around a minute later with a gap in your memory. My biggest fear is that something might happen during that gap, and I’d be totally unable to control or remember it. It’s an extremely disconcerting, unpleasant feeling: at the same time, I dread my absences, but when I feel like I did earlier I sort of want it to happen, simply so it can be over and I can get on with my day without worrying that I could suddenly blank out. This morning, however, I was fine in the end; the brief spasms of panic died away and I didn’t have an absence.

I used to keep such things to myself; I used to think it was better not to make a fuss and get on with life. After all, as I touched upon here, very few other people have such experiences so nobody would know what I was talking about; and there’s nothing anyone can do to stop them anyway. Recently, however, there seems to be a growing trend in open about such things, especially online. More and more people are opening up about their disabilities and impairments, however minor. In the grand scheme of things, that’s probably very healthy. Why, then, shouldn’t I join them? If everyone else is now being so open, why keep my anxiety about my absences hidden? As I say, it’s a very unpleasant feeling; but it’s one I’ve always experienced every few weeks or so. Writing this won’t make such feelings go away, but nonetheless it feels good to be more open.

Hoarding Is Normal

I was watching breakfast tv earlier, and there was an item on hoarding being recognised as a psychological disorder. I must admit it caught my interest for several reading: my initial reaction was to indignantly wonder how something so seemingly trivial could be seen in the same general sphere as more significant medical problems and disabilities. But thinking about it a bit more deeply, post my second coffee, it occurred to me that the issue is rather more complex.

The question is, what is a ‘condition’, be it medical or psychological? Probably the simplest, broadest answer I can think of is that it is a list of symptoms which significantly impact someone’s quality of life or ability to live. My cerebral palsy, for example, effects my ability to move, walk and talk. The question therefore arises: how could hoarding effect your quality of life to a similarly significant degree?

I think it’s fair to say that we all collect or hoard things we like. I have quite a large collection of books and DVDs: I hardly watch or read any of them these days, but as I wrote here, they are nonetheless significant to me. Does that therefore qualify me as a hoarder; and might it mean that I have a psychological condition?

I don’t think that it does, particularly given that all my books and films are neatly filed away on my bookshelf. If my books and DVDs were strewn all over my flat to the point that I could barely move, it would be a different question. That obviously gives rise to questions about cut-off points, any of which will inevitably be arbitrary and subjective. Although I can see how excessive hoarding may cause issues, especially if people are living in small houses or flats, if it does not prevent someone from living a productive, happy life, I think that pathologising such behaviour might do more harm than good.

Most obviously perhaps, would it not just serve to reinforce such behaviour? As soon as you give anyone a label or identity of any kind, they unconsciously internalise that identity; they start to emphasise the traits which mark them out as a member of that group, often without realising it. It becomes part of their identity, and ultimately creates yet another artificial sub-category with which society can fragment itself even more. Thus as soon as you label someone as a hoarder they will start to identify as a hoarder and start to hoard even more.

Moreover, in pathologising a fairly common, rather innocuous set of behaviours, in defining them as a medical condition, I feel we are making things too complicated. Why must everything be categorised and diagnosed? While medical diagnosises sometimes help people access the support they need, in this case, if their behaviour isn’t harming them, why not just let people do what they are to? Would it not be wiser to just accept people as they are, without labelling them as strange, abnormal or impaired?

The Most Unpleasant Few Hours of my Life

It is incredible how much better a good night’s sleep in your own bed can sometimes allow you to feel, and how much it can help you regain your usual perspective on the world. It has been quite a rough, nasty few days to be honest: I was considering keeping all this to myself because it was such a nightmare, but as usual the blogger in me has taken over. Basically, it started six days ago, when John and I were in Paphos. After quite a few Keo beers the night before, I woke at about 4am, feeling slightly strange and disoriented. I lay awake, unable to get back to sleep, until John woke at around seven. When he did, he passed me our hotel room’s television remote control so I could watch a bit of TV before getting up and dressed. But then I noticed something: my fingers wouldn’t press the right buttons on the control, and I could suddenly sense something was very, very wrong.

It was like nothing I had ever felt before. I had had quite a few nasty absences over the previous few days, but this was of another order. My fingers were going haywire, and it seemed like reality itself had gone out of kilter. It was rapidly getting worse. I told John, who phoned an ambulance.

I cannot remember the next few hours, so forgive me if I omit the detail; I just know that they were the most unpleasant, frightening hours I have ever experienced. Reality seemed to have become chaotic, time seemed somehow to be repeating on itself. It was horrible, and something I hope never to go through again. I must say, though, that the way in which John stood by me that day, looking after me, making sure I had the medical help I needed, was truly humbling. I doubt there are words in any human tongue which can come close to expressing the gratitude I owe him, save to say that I don’t think I would be here now writing these words, had it not been for his help. I will now forever regard him as something akin to a brother – Samwise to my Frodo, Spock to my Kirk.

We spent the day in the hospital. I had many tests, including a blood test and EEG. My memories are predictably extremely hazy. I’m not sure how many epileptic seizures I had, but it was several.* All I remember is being unable to stop my arms and legs shaking. There was talk of keeping me there overnight, but I preferred to be taken back to our hotel, as it would be easier for me to eat etc there. I’d been put on a drip of some kind, and the fits were easing off. John took me back to our hotel, and I had a fairly good night’s sleep.

That was a few days ago, and fortunately since then I have seen no sign of a recurrence, although to be honest I didn’t feel quite right for three or four days. I don’t think there is any clear cause, but obviously I must do all I can to prevent it happening again. That includes improving my diet and avoiding alcohol at all costs. I went to the local hospital yesterday to get checked, but nothing was found. My deepest regret is that this nightmare ruined what was turning out to be a wonderful, fascinating trip. Again, my profound gratitude goes out to John: not only did he once again take me on an amazing holiday, but this time he helped me through the most unpleasant few hours of my life. How lucky I am to have such a friend.

*I presume they were epileptic, given my absences are essentially a mild form of epilepsy, but of course I could be wrong

The Greatest relief I Have Ever Felt

Yesterday was so crazily farcical that I barely know where to begin, but I think I’ll blog about it anyway just for the record, not to mention the enormous sense of relief I ended up experiencing. It all started the evening before, when John noticed we had somehow lost the power cable for my iPad. By the morning my charge was getting really low, so we decided to go buy a new cable. I use my iPad a lot, not least as my communication aid. The fact that it wouldn’t turn on at all put me in serious trouble. John asked the staff at the hotel where we could find one, and they suggested a shop not too far away.

We got to the shop perfectly fine.   There was a step up into it, so John went in and got the cable we needed. He then came back out to get my credit card from my bumbag.  The problem was, he couldn’t find it anywhere in my wallet.

We both began to panic, me especially: I was sure I had brought my card. I rarely use it these days, but we assumed I would need it here. We couldn’t find it anywhere in my wallet or bumbag though! I quickly began to loose my patience. Fool that I am, I must have left it back in London. We were screwed.

I was on the verge of suggesting forgetting the whole trip and going straight back to the UK, when John suggested I lean forward in my wheelchair. In a moment of jaw-dropping relief, he found my credit card down the back of my trousers. I have genuinely no idea how it got there, or how John guessed it was there. It was, though: safe and sound, and I had nothing to do worry about. The relief I felt in that moment was like nothing I had experienced before. Our trip could continue, and I hadn’t made the screw up of my life.

We spent the rest of the day enjoying more of Cyprus. We bought the charger with cash in the end, and my iPad is now fully charged. Today we are going to explore more, but I certainly plan to keep an eye on my credit card, and make sure it doesn’t disappear down my kecks again.

We Are Being Trolled

I know I touched upon trolls a few days ago, but it seems to me that they are becoming more and more virulent. I was just watching the morning news, when it struck me that we are all being trolled. On the internet, a troll is someone who posts controversial or inflammatory content into a forum to get attention or stir up trouble. They deliberately wind people up for their own amusement. I see it all the time, particularly with respect to ‘debates’ like the shape of the earth, where people seem to want to argue black is white that the world is flat, just to perpetuate the debate. Their arguments are getting sillier and sillier, more and more absurd, merely to stir people up and get them to respond.

However, it seems to me that we are all now being trolled on a far broader scale. This morning note how Elon Musk has tweeted all kinds of rancid, baseless bullshit about Labour and Starmer etc; we see guys like Trump and Farage doing something similar. Isn’t it obvious that they’re just trying to wind people up and get attention. They want people to react simply to pull the focus onto them. In the press conference the PM gave earlier about the plans for the NHS, half of the questions from the media concerned Musk, simply because he had posted an idiotic tweet.

Thus people like Musk, Farage and Trump are effectively nothing more than internet trolls, and would just be ignored if we collectively had any sense. The more we fail to do so, the more we feed their craving to be the centre of attention, and the worse and more inane their spewings become.

Wrong Kind Of Mummy, Matt!

Sometimes things happen which part of me thinks are too embarrassing for me to record here, yet I feel compelled to do so because it is so amusing, or to teach myself a lesson. A good example of this would be what happened yesterday. It was Boxing Day of course, and my brother Luke, his wife Yan and my little nephew Elias came to visit me and our parents in Harlesden. We were all going to have Boxing Day lunch together.

To be honest I was feeling rather pleased with myself: I had gone to the same shop at the o2 where I got my “Make America Think Again” baseball cap and bought Luke and Yan caps with the word mummy and daddy in Chinese on them. Of course, neither I nor the lady helping me at the shop knew a word of Chinese, so I had asked her to type the words Mummy and Daddy into google translate. I thought I was being clever and multicultural.

Luke, Yan and adorable baby Elias arrived at around one yesterday. Naturally, the opening of presents was quite high on the agenda, and I was very eager to see what they would say about my gifts. I expected a mixture of shock and amusement. As soon as she caught sight of the cap I had got for her, however, Yan looked rather confused, as though something didn’t make sense. Luke’s “Daddy” hat was fine, but not Yan’s.

A few seconds passed, and then Yan made the connection. The cap said mummy, but it was the wrong kind of mummy. Total fool that I am, I had given her a cap with the Chinese word for the ancient Egyptian embalmed pharaohs written across it’s front!

When my sister in law told me this, I curled up into a ball in a strange combination of total hilarity and utter embarrassment. Only I can make such mistakes. Obviously everyone else found it just as funny, reassuring me that it was the thought which counts. Even so, I suppose it will teach me not to try to be so clever!

The Room Where Time Stops

I suppose I have a pretty strange relationship with the front room of my grandparents house in Harlesden. I vaguely remember that when I was five or six, I used to be reluctant to go in there, preferring to play in the back room or the passage next to it. The front room was slightly too smart for me and my brothers to play in.

Yet, sat in that very room with my parents as we opened our presents this morning, I couldn’t help feeling utterly astonished: on the walls around us were photographs of four generations of my family, spanning about seventy years of history. On one wall are three framed black and white  photos of my mum, aunt and uncle. Probably taken some time in the sixties, my mother looks about ten – a smiling, exuberant,  bubbly young girl.

Opposite that wall though, on a table by the front window, now stands a beautiful glass photograph of my niece and nephew which my parents opened just this morning. They  both bear the kind of cheeky, fun filled smiles that only children their age seem capable of; it’s a beautiful, beguiling picture which I found staggering when I first saw it earlier, astonished at how quickly my niece and nephew are growing.

That glass photo now sits on a table next to an electric photo frame sent by my other brother Luke, showing a montage of pictures of the newest member of our family. Elias is now around thirteen months old, and also growing rapidly. The photos reveal a young boy so full of life, for whom the world is still so boundless and captivating.

On the third wall of the room and on the mantlepiece above the old disused fireplace, are various other photos of other members of our family. There are two of my Greek Cypriot grandparents, my Yiayia and Bappou, looking just as loving and caring as I remember them to be when they lived here and we used to come to visit them. There is also one of them on their wedding day, taken before anyone here today was born. And there is also a photo of myself, my brothers and cousins – their grandchildren- as a group, probably taken when we were last all together.

Looking at the pictures on these three walls, they inevitably remind me of the unstoppable passage of time. My grandparents are no longer with us, and my brothers and cousins are in various places around the world, as far afield as Brazil. Yet here in this north London house is where that all started; where, over seven decades, three generations have been raised with warmth and love. Time, of course, can never stop,  just as my brothers, cousins, nieces and nephews should never stop heading out into the world;  but the pictures on the walls of the front room capture moments in time which bring the family together again.

Happy Retirement Mrs. Hickson

I came across some news which I think is quite astonishing last night. On my old school’s Facebook page, I saw that Chris Hickson was retiring. That was a name I hadn’t heard in a long, long time: Mrs Hickson is – or was – the Speech and Language Therapist at Hebden Green. One of my very earliest memories is of her coming to the nursery department of school to take me to her office for our weekly sessions. I must only have been four or five at the time; the sessions were one-to-one, as I was the only kid in my class who needed speech therapy.

My weekly meetings with Mrs. Hickson continued throughout my time at school. If memory serves, they were often basically just chats, where she would just encourage me to speak. This was long before I got my first communication aid, so it was obviously important to get me to talk as clearly as possible. We used to talk about absolutely anything, especially my favourite books at the time. Obviously, Mrs H would then structure exercises for me around those subjects, but I remember sessions with her being fun and engaging.

Once, getting into her office, I threw my school bag onto the floor before sitting down. I was at the age when throwing things around seemed like a fun thing to do. I remember Mrs. Hickson looking quite aghast at me: “Matthew,” She said, “What if that bag contained a communication aid? It wouldn’t be a good idea to throw it around like that if it did.” At the time I didn’t feel very concerned, but I can see now that it was the beginning of something which would become far more significant for me.

Indeed, it was with Mrs. Hickson’s help that I was given my first Lightwriter. It was a relatively primitive device, compared to the communication aids we’re using now, but it completely revolutionised my life. I was suddenly able to talk to anyone and everyone I wanted, not just people who knew me well enough to understand my speech. The first morning I got one, I remember going up to shop keepers in Macclesfield and asking them for all kinds of bizarre things. It was like a whole new world had opened up.

Obviously, it was only because I had this new ability that I could do all kinds of things which would have been difficult previously, like going to the comprehensive school next to Hebden for GCSE english classes. That then lead to me going to college, then university, and eventually moving down to London. That would simply not have been possible had I not had a communication aid: talking to anyone like Esther, Charlotte, John, or the guys over in Tesco, would have been off limits. These days I use my communication aid daily; it is essential to me. The last twenty years of my life could not have happened had I not had the ability to communicate with other people efficiently.

All that is ultimately thanks to Mrs. Hickson and her foresight. I am thus highly indebted to her. No doubt she has helped countless other young people in similar ways. Frankly, given that I left school over twenty years ago, finding out that she is only just retiring yesterday struck me as astonishing. Indeed, Mrs. Hickson had been working at Hebden since the seventies: her legacy must surely be incredible. In many ways, it is because of her that I lead the life I now do, trundling around South-East London, talking to all kinds of people; going into shops and asking for all kinds of things. I therefore wish Mrs Hickson the happiest of retirements. Most of all, I’ll always have fond memories of our weekly speech therapy sessions back at school.