family

Pavements, Powerchairs, and Jaw-Dropping Kindness

To be honest yesterday afternoon for me was long and frustrating, mostly sat stuck going nowhere on a pavement in my powerchair in Kensal Green. I had headed that way to try to explore the area, and hopefully find a new way to the old family house in Harlesden. It looked straightforward enough on the map: take the Elisabeth Line to Paddington, follow the canal west for a bit, then turn right. I didn’t think it was that far, and I’ve been wanting to start to explore that part of London for some time.

It had been going rather well and I had nearly got there, when my chair suddenly came to a juddering stop. It has done it before: the power lights start flashing, and it refuses to move. Of course I immediately started to panic: without wifi, I couldn’t contact anyone, so I was stuck. Fortunately – and I can’t believe my luck with this – within a minute or so a young woman came the other way along the pavement. She asked if I needed help, so I explained the situation to her.

Remarkably, she then spent the rest of the afternoon with me, making countless phone calls, including one to my parents, and eventually arranging for a wheelchair accessible taxi to pick me up and take me home. The young lady, who introduced herself to me as Agatha and had a violin case as a backpack, didn’t know me: she didn’t have to do what she did, but acted out of pure, jaw-dropping kindness.

To cut a long, frustrating afternoon short, I got home at about six last night, Artur waiting for me, slightly worried. Thanks to things like the Elisabeth Line, ferrying us at daunting speeds under London, it is easy to forget just how vast the metropolis is; only for it to come juddering back when you spend two hours in a taxi, crawling at rush hour across the city’s surface. It had been a long day, and I got home knackered. Yet, ultimately, I suppose in a way yesterday was a good day: I explored a new area, and had a new experience. Best of all, I made a new friend. It is only thanks to people like Agatha that I can live here, roaming London in my powerchair. Without her, I would have been truly stuck, going nowhere on that pavement the other side of London. I’ll always be grateful for the staggering generosity of people like her. Of course, we established contact on Facebook, so I now really hope we could meet again sometime, perhaps for a coffee, so I can thank her properly.

Hospitals, Gratitude and Blog Entries

About three weeks ago I began to feel very, very unwell. I don’t know what was wrong with me: it certainly wasn’t a normal sneezing and coughing cold. Physically I was pretty much fine, but I felt dizzy, disoriented and not myself at all.  It lasted a couple of days and I started to get slightly concerned, so I decided to head to my local hospital to check whether anything was actually the matter with me.

It turned out that there was nothing wrong with me, and I was perfectly fine: everything checked out and I was back to normal a couple of days later. I think I ought to record, however, that my treatment at the hospital was absolutely astounding. For some reason, I was put at the front of the queue and made a priority. I was thoroughly checked over, my blood pressure taken and everything. That was quite a relief in itself, and of course it is only because we have the NHS that I could receive such outstanding treatment.

I am now, I’m glad to say, feeling perfectly normal. For the last couple of days though, the thought has been nagging at me that I should go back to the hospital and say thank you. It feels like the right thing to do, given that I received such outstanding treatment. The thing is, I don’t think I can just roll into the hospital and ask to see someone: hospitals are extremely busy places after all, with many people in need of critical help. I wouldn’t want to distract anyone from their jobs.

Thus the best thing I could do, I decided, is to write this blog entry. It was only a minor episode, and I had previously thought I would just keep it to myself. Yet if through recording what happened here I can express my deep seated gratitude for my treatment, then I really hope that the staff at the Queen Elizabeth Hospital in Woolwich know how thankful I am for their help. Above all, I find it profoundly reassuring to know that I can roll into a hospital like that and receive such help when I need it. We are all very lucky indeed to have such support.

Coming Home To A Much Darker World

Something is very, very wrong at the moment.

I just got back from central London. I thought I would go up to watch the Lioness’ victory parade: well, you know how captivated I am by such big cultural occasions, and it wasn’t as though I had anything better to do. To be honest, though, I didn’t find it that inspiring, and I was struggling to decide what, if anything, to say about it on here. I lined the Mall with thousands of other people, just to get a brief glimpse of an open top bus going past. That’s about it, really. I couldn’t actually see much because there were so many other people standing in front of me.

Mind you, after the parade itself I treated myself to a lovely trundle through St. James’ Park and eventually to Bond Street Station, during which I once again reflected to myself how lucky I was to live in such an awesome city, where such marvellous events take place, and which has such a wonderful, ever-improving public transport system. Where else could someone like me live a life like mine? By then though I was getting rather hungry, so I headed home on the Elisabeth Line for some lunch.

Once in, I put the news on while I ate, as I often do. I was greeted with images which instantly chilled my blood: pictures of children in Gaza, starving to death; vast scenes of deprivation and destruction. The contrast with what I had just experienced could not have been more horrific. Here I am, in this cosmopolitan world city, arsing around going to all these parades and cultural events; at a time when elsewhere in the world we are watching a conflict unfold, the horror of which we haven’t seen in decades. I know I touched on this a couple of entries ago, but I honestly find this disturbing. We seem to be acting like nothing’s going on, or collectively ignoring the unignorable. I was happily eating my lunch while, on the screen in front of me, emaciated babies were crying out for food. I had just ridden a brand new subterranean railway which cost billions of pounds while elsewhere in the world entire cities are being laid to waste. Children are starving, people are suffering, war crimes of the worst kind are being committed; yet still we parade our footballers around in busses and cheer their victories as if sport is more important, or as if the wider, darker world can be put to one side while we sing songs and drink champagne. Something here is very wrong indeed.

Paradise City Indeed

There are times, every now and then, when my jaw drops in astonishment of how truly lucky I am: moments when one of my dreams has come true, or a crazy far-fetched fantasy has been somehow brought to life. Last night saw another of those amazing moments.

When I got wind that Guns and Roses were going to play Wembley Stadium this summer a few months ago, of course I automatically thought that watching them would be great, and contacted mum to get tickets. These days, it seems that my mum is still the best person to ask when I want to arrange such things. Mum duly obliged, and I was soon counting down the months to last night. I have been into Guns and Roses since school: aged about ten or eleven, a couple of my classmates were into them, and I was struck by their mixture of rebelliousness and jaw-dropping electric guitar riffs. In the thirty years since, whenever I wanted to let off a bit of steam or the world got too frustrating, I always put on a Guns and Roses song: the music seemed to be able to do the screaming and shouting for me.

To have at last watched them perform live, then, at London’s greatest stadium alongside a crowd of tens of thousands, was utterly incredible. The atmosphere there last night was phenomenal, like nothing I had ever experienced before. Of course, I can compare it to things like going to watch Greenday or The Cat Empire, but in a way this was on another level. The volume was almost deafening, so much so that I could barely make out the lyrics being sung. I couldn’t even make out what John was saying, sat right next to me. Yet as the sun went down and the sky grew darker, and the lights in the stadium came on, there seemed to be a wonderful aura about the place: the audience in front of me all turned small lights on, so it looked like a reflection of the night’s sky above us. As the band went through their back catalogue*, often getting up and dancing to my favourite songs, it struck me how truly lucky I was. And when they finished the evening with Paradise City, probably one of my favourite pieces of music ever, I was absolutely euphoric.

*Mind you, I was slightly disappointed that we must have arrived slightly too late to hear them play Live And Let Die.

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 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.

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.