Archive for the ‘Miscellaneous’ Category
I’ve just come back from holiday, and I wonder what I achieved or if it was what I wanted.
Usually I mark success by having some great photos to look back on. This started on honeymoon in Iceland and I’ve come to realise I’m happier going on a short walk with a camera in my hand than spending all day in a museum – because I have nothing to show for the museum trip.
My husband and I usually opt for “staycations” but I think we’ve now covered the mainland countries and all cities of interest. There’s something more exciting about going abroad and having to contend with foreign shops rather than picking up a sarnie from Sainsburys, or having to pack a suitcase for different weather than our own (my vote’s for somewhere nice and cold). However, going abroad the costs mount up – especially if we need to hire a car for mobility – and it’s harder to find low cost accommodation if you can’t carry a tent with you. But how can I justify spending a large chunk of my beloved’s monthly income on just one week in our lives?
We went camping. I’ve come back exhausted. My body wasn’t used to a week of Doing Stuff with no rest days, even if I did have lie ins and the odd nap before dinner. Surely holidays are meant to be relaxing? I’ve always been bewildered by people who spend lots of money to fly abroad, then while away every day on a beach. Shouldn’t they be busy Doing Stuff rather than wasting time lying on their back? At last the penny drops. Perhaps I need to start factoring in the odd lazy day without feeling guilty about it.
But I’m not very good at relaxing. I find it hard to do nothing; my brain’s always on the go and if we stay at base I’ll end up infuriating my husband by sharing every thought I have or cadging for another game of cards. And on days when pain has woken me up early, it’s better to keep Doing Stuff as a distraction, even if my capacity is limited.
Well, I did have an easy day scheduled; the last day of our break was due to be spent propped up in front of a stage, but thanks to good old British weather the event was rained off and we had to make do with something more active – and less chilled.
The idea of staying in the UK probably came from the way I was brought up; I remember trips to London and York as a child – long drives to get there with my brother being sick in the car, interconnecting hotel rooms, and strangers babysitting. Days of being dragged around museums because it was “good for you”. But our holidays weren’t that bad – they taught me that I love city breaks and that my own country has plenty to offer. It also made me realise that you have to be very fond of someone before committing to spend time in a small space with them, be it car, tent or hotel room!
Anyway, I’m back: from a week in Yorkshire. I have some wonderful photos from Yorkshire Sculpture Park, some great images of York Minster and some hazy snaps from a boat trip. I picked up postcards from Eden Camp, a booklet at the National Media Museum and drove a mobility scooter around Bolton Abbey. So what if I’ve come back exhausted? I’ve been out with my husband and Done Stuff, and – which is more – we’ve spent a week away from work!
Today Formula 1 fans in the UK woke to the news that from 2012 the BBC will only show half of the season’s Grand Prix. Sky Sports will cover every race. This is bad news for the sport and the fans alike.
The sport loses out because their financial model relies upon races being broadcast on free to air (FTA) television. Instead of taking money from TV revenue, the teams have sponsors, based on the fact that their logos will be seen on television screens the world over. Back in May the President of the Formula One Teams Association (FOTA), Martin Whitmarsh, said: I think it’s clear that the business model of all the teams relies on free-to-air. We’re selling a large, broad, media exposure. That’s the business model and I’m sure that that’s the business model of all the Formula One teams will require going forward.
Ofcom agrees, explaining “The majority of Formula One’s income is derived from sponsorship which relies on the sport attracting large viewing figures …
Sponsorship, rather than media rights, is the primary source of income.”
Unfortunately it’s more likely that the BBC are trying to make savings and can no longer afford to keep Formula 1 in its current format, than that Sky have made a vast offer to show the sport, which would filter down to recompense the teams. I can see FOTA being up in arms about this move away from every race being free to air in a country which is one of their largest audiences, and where most of the teams are based.
The news is bad for fans, too. My husband has already said we won’t subscribe to Sky Sports as he doesn’t want to line Rupert Murdoch’s pockets; not everyone can afford the subscription in any case.
So my other option is to find a bar showing each race. Hang on – some of the Grand Prix are on at 5am! No longer will I be able to trudge to the television while wrapped in a duvet, and pubs don’t open in time to show many of the early morning races.
Even when the Grand Prix are on at a more humane time of day, why would I want to watch them on Sky? For me, the BBC is the home of Formula 1. I grew up listening to the excitable Murray Walker and posh James Hunt. Nowadays I enjoy Martin Brundle’s grid walk, and the post race “Red Button Forum”. Sky just won’t be the same. Martin Brundle himself is not happy, having tweeted: “Found out last night, no idea how it will work yet – I’m out of contract, will calmly work through options. Not impressed.”
What is the point for the BBC of showing just half the races? The news is spun by the broadcaster as a way that the sport can remain with them for longer. Rubbish! People will want to follow the whole season or not at all. Watching Grand Prix becomes a fortnightly habit – I keep the weekend clear and tune in. Inevitably people will get used to watching Sky, the BBC will demonstrate a drop in viewing figures and bow out altogether, leaving us with no alternative.
I wonder whether Sky will offer online options – like they do for cricket – where you can sign up just for the day and stream the event? That could work, although I would keep the sound down and listen to BBC 5 Live’s commentary in the hope of some familiarity and a credible commentary. There are other, less legitimate, websites which stream races – at least that would be one way to watch the race without giving my money to the Murdochs!
Whichever way you look at it, this new deal is bad news for both the sport and the fans. With the new deal, we get the worst of both worlds.
Royal Wedding Bank Holiday (Friday)
Four days after Ian’s death, I learnt the meaning of “taking it one day at a time”. I was angry, upset and raging. I posted online to various communities from which I have drawn much strength and support – nobody objected and many people knew how I feel. Most touching was a comment from a contact of mine who lost her dad a few years back – she’d written an article about it so was able to easily share her words. I got the impression that unlike many others, she truly did know how I was feeling.
I was overcome by the fact that Ian always fought illness, always thought he would be there for longer, that he thought he had “all the time in the world” (in the words of a favourite tune) yet he was so very wrong. Just 8 weeks after he turned 60, he left us.
I drafted my tribute to Ian for the funeral and worked on the layout of the Order of Service.
Saturday 30 April
A duvet day.
To my surprise, I discovered that Ian’s death notice was the top “most read” page on the local newspaper’s website. My friends had been reading! I hoped that it had been noticed by readers who knew him, so they might remember him.
A stronger day. I rose at around 11am and threw myself into printing the Order of Service, finalised my tribute, and created another idea – an SAE to be given out at the funeral, inviting people to share their memories of Ian with us.
Over the weekend I’d been sending questions to Fiona – on reflection, perhaps some of which ought to have been addressed to the funeral directors, but they are on the end of a fuzzy phoneline while Fiona responds quickly to email. She was wonderfully patient with us, and I do hope we were not overly demanding – knowing how we can be perfectionists and how we wanted the very best for my father. On the other hand we were utterly confident that she would give Ian the send off he deserved, even though she never met him.
I received emails and tributes from friends. It helped to know I’m not alone, that people had noticed what has happened and what we were going through.
Early May Bank Holiday (Monday)
We left our dog in kennels, then set out for Taunton again. All day I felt nervous and sick, so poor Mike was implored to drive extra smoothly on the four hour journey. We checked in at the hotel and then visited my mother, showing her a sample order of service. I left my signed card for the flowers, so my brother could add his name to it. At this point we were supposed to go for drinks with my best friend and her wife, but I still felt unwell so we withdrew, and had an early night.
Bank holidays over, there was business to finish off. We picked up the cards from my mother and dropped them at the florists’, where we also settled the bill. We also had a short list of questions for the funeral director to which Mike attended; finding out that we should bring the order of service on the day, which the funeral directors would hand out, and that we would be able to view the flowers directly after the service.
By now my father’s death announcement had been read over 1200 times on the Somerset Country Gazette website, keeping it on the front page every day (in the list of “most read” pages). My online friends had decided it was a nice thing to do, to make sure as many people as possible would see, and indeed I heard of people who had only noticed Ian’s passing because of this. We received 28 candles on that page from friends and followers, which was very touching.
I deliberately sat up late, putting off going to sleep, dreading what the next day would bring. At around half one I finally turned off the light.
The alarm went off. I moaned “already?” thinking that I’d only been dozing, because I’d been dreaming about trying to sleep. In fact I’d also been dreaming about all sorts – a horror movie scene where the coffin burst open, and another sequence in which I and my family were dressing and preparing to leave for the funeral while my father stood around saying “Come on you chaps! Where are we off to? Come on, tell me!” and I muttered “You shouldn’t be here… what are you doing here…?” in a panic.
A quick wash wiped away the memories of those nightmares, and I went into a carefully planned sequence. I sat in bed, distracted by a motorsport magazine and BBC News 24, while trying to eat a banana. At one point I got up, straightened my hair, then returned to bed. A quick call was made to my mother at 2pm, an hour before the service. Only at 2.20pm did I rise and dress, ready to leave at 2.35 exactly. I succeeded in distracting myself and when the time came to leave for the funeral I had a few butterflies but felt ready – much stronger than in the preceding days.
When we arrived at the crematorium I saw familiar faces in the carpark. We gathered, but couldn’t see Fiona, the Celebrant. I suggested we go through to the waiting room, and of course there she was, waiting for us with Barry from the funeral directors. We were ushered in to a family waiting area, and everyone else shown to a general space. It was strange to meet a cousin who I hadn’t seen for 20 years, and a mix of familiar and new faces.
A moment later Barry ushered us forward, ensuring a formation with family first, queuing us in a rather formal manner before gently ushering us into the chapel. Family filled the first row and as others filed in behind, it looked like there were around 50 people in the chapel at once. A reasonable showing, everyone from neighbours to close friends; some who had only met Ian a few times but been very touched by him, as well as those who saw him regularly but never got to know him quite as well. A good turnout, and given that illness had stopped Ian from getting out much during recent months, it was good to see how many people were there – I’d been scared that he’d have been forgotten.
I noticed that Stairway to Heaven was playing – Ian’s favourite song – and then it faded as the service began. Everything went well; Fiona described Ian’s life; his old mate Terry spoke about their discussions on the state of local roads, fine dining and a trip to Monaco Grand Prix (which happened when I was just a child). He said that there had been a toast to Ian that lunchtime and a band of friends’ trips to top restaurants would continue in Ian’s memory. Then came the reading of a tasting menu at the Fat Duck in Bray, which Ian had very much enjoyed. Next, Mike read my tribute to Ian, before a contemplative time while we listened to a Jean Michel Jarre track that he’d liked (Last Rendezvous) and those of a religious nature could pray. Finally came the moment I was dreading – the curtains closed around Ian’s coffin. Fiona read “If”, the poem by which Ian had truly lived his life, before the ceremony ended on a track which Ian had always said he wanted at his funeral (I checked with him every few years just to be sure) – Relax by Frankie Goes To Hollywood.
So the ceremony was a true celebration of Ian’s life. People learnt something new about him. There was laughter in the right places and very little sadness. But as we left the chapel, and I had to leave Ian’s coffin behind, I welled up. I muttered “Bye Ian” and pushed myself into the daylight, trying to hold my composure while turning to thank people for coming.
The flowers were perfect – fronds of asparagus and bulging aubergines amid traditional greenery and fuchsias. They looked spectacular – normal from a distance but distinctive close up – just as I’d requested.
We’d asked people to donate in Ian’s memory to Mendip Ward – where he spent a total of several months out of the previous 2 years, and where staff had been so kind to him. Apparently the funeral directors would hold donations open for 6 weeks before sending a list of donors and the total to us, and the money to the ward – giving us time to write and let the hospital know that something would be on the way!
After the ceremony my mother asked to be alone, so Mike and I went for a drive out into the Mendip hills (which were covered in bluebells), and then we went for a drink at Ian’s favourite place, Brazz, where we were joined by my mother and brother.
Returning to the hotel, I felt as though a weight was lifted from me; things were more easy and relaxed, I was able to eat without feeling unwell. Then I received a text message from a friend saying “Well done for getting through today. This is where the real grieving begins.”
So grief is only now beginning? Oh hell, is it really?
At 6.03am I received The Call. I dressed at once, met my mother outside the hospital, leaving Mike to park while we went in. We were greeted by a member of staff who told us in a sombre voice that “he’s just this minute gone”. The time of my father’s death was 6.20am.
We went into his room, I held his hand, kissed his forehead, and said goodbye. Then I left my mother to do the same, before we moved into a staff room to learn what came next – we had to meet the hospital’s Bereavement Officer tomorrow morning, who would arrange an appointment for us to visit the Register Office to formally record the death. From then on, we’d be on our own.
That afternoon, at my mother’s house we decided tentatively on a funeral date. It was Easter Monday and for some reason the following Wednesday afternoon seemed like a good idea. Although it was a bank holiday we decided to make calls right away.
At this point, we needed to know who to call. Normally, you’d call a funeral director. In our case we knew we wanted a humanist funeral, so I’d already looked up the profiles of local humanist celebrants. We were doing things by reverse – finding a celebrant first, and their choice of funeral director second, rather than picking a funeral director seemingly at random, then being limited to their own officiant. I guess if you had a vicar you’d call them, but if you had no faith you might normally be guided by anyone from the phone book. Instead, we chose a humanist to guide us through.
The celebrant whose profile chimed with us happened, by coincidence, to be the partner of a friend of mine. Her name was Fiona Ferguson. I called her and she agreed the following Wednesday afternoon would be suitable for the funeral, and suggested a funeral director. I arranged for Fiona to visit us the next day.
My next call was to the funeral director, E White & Son. They were happy to represent us. I was glad we’d found a celebrant we liked and a funeral director with whom they would work, rather than the other way round.
Whites could access the Crematorium booking system, so we decided upon Wed 4 May at 3pm.
Next, we grabbed a copy of the local paper to plan the announcement. The deadline was 11am the next day, so we quickly agreed upon wording and that I would organise it online in the evening if I could, or by phone the next day if necessary. I failed to get the options we wanted via their web interface, so I set the alarm for early on Tuesday morning.
All this was arranged, and yet it was still only a few hours after my father had died.
This was supposed to have been the first day of my holiday.
Shortly after 9am I arranged the death announcement in the local press.
We then tried to call the hospital’s Bereavement Officer – their office opened at 10am but White’s had suggested that we might get through on the phone a little earlier, but there was no answer. As there had just been a 4 day weekend, they were likely to be very busy – so we decided to simply turn up at opening time.
My mother got there just before us, and booked an appointment for 2.30 that afternoon, with a trip to formally register the death at 3.30. This clashed with our visit from Fiona – my mother was coping but not quite remembering everything that had been said. Never mind – Mike could go to the bereavement office and collect the doctor’s death certificate while I and my mother met Fiona, and that’s what happened.
Fiona was lovely, and very patient as we ran through the arrangements – easily agreeing on the music and deciding on readings. I think Fiona thought we were quite mad, as instead of flowers we wanted a flower and vegetable mix, to reflect the foodie in Ian!
We made as many arrangements as we could, Then as Fiona left I dashed out of the door with Mike to register the death at the Register Office. I felt this was the last thing I could do for Ian and that it was important that one of the immediate family did so. My brother also joined us. I was amused to see the walls of the office covered in very serious warning signs (against fraudulent declarations, etc.) in the style of Keep Calm and Carry On notices.
Mike handed over the doctor’s death certificate, and then we were led through questions about Ian’s birth, marriage and death dates, and occupations of both him and my mother. Next came my own details, before I signed the register – using a fountain pen. It felt so
odd to see a sheet headed with the word DEATH and then my father’s details.
As well as certificates of death (ten at £3.50 each) we also received a form for the funeral director (I think this was stating that it was ok for a funeral to proceed; Mike already had a form from the hospital regarding collection of the body).
The Funeral Directors had requested a progress update in the afternoon, so when I returned to my mother’s house at 430pm I rang, and we agreed they would drop over the next day at 1pm – “to sort out paperwork”.
There were other things to sort out, such as bereavement benefits. My mother organised Mike to spend over an hour on the phone to the DWP in order to sort out the necessary funding for her. Fortunately just one call is necessary to arrange everything that is available – this includes the state payment for the funeral as well as extras we hadn’t known about – bereavement payment (a one off lump sum) and bereavement benefit (paid for 52 weeks if you are under state pension age). Mike was wonderful in arranging all of this.
I got up around midday, eating simple food that we had kicking around the hotel, before going to my parents’ house and meeting the funeral director for the first time. Barry, with whom I’d been dealing, turned out to be a serious and loquacious old man who had never heard of Led Zeppelin, let alone Frankie Goes To Hollywood; very much old school. Still, we got the basics agreed, and paperwork exchanged (some from the hospital which Mike had collected, and “the green form” from the registrar which I’d gathered) so things could now be confirmed. Barry could now arrange to collect “Mr Wilson” and everything began to fall into place.
After his visit Mike and I hit the town to try and sort out floral arrangements. We’d decided on just one spray from our family, requesting donations from other people. Because Ian didn’t really like flowers but was a gourmand, we found a florist who could incorporate asparagus and aubergines into the display. I was nervous and repeated myself many times, but it was important to me that the display looked normal and tasteful from a distance but when you got close up you’d notice “oh goodness – vegetables!” We took cards for my family to sign, to go in the display later on.
Fiona kindly emailed over a first draft of service on Wednesday, so we visited my mother in the evening with the draft. It was delightful and we were very happy.
Mike also went into the Job Centre today, to get forms for my mother to formally register the death and so on. Mike has been quietly getting on with everything necessary, and holding me together at the same time. He was amazing – I don’t know how I’d have coped if it was just me and my mother trying to do this.
At last we drove home to London for some respite. I found it very hard to cope – playing my favourite music tracks all the way home, but welling up at various moments. We arrived home and fetched my dog back from kennels for company.
Ian’s death notice went online on Somerset County Gazette’s website today.
(to be continued)
Nobody ever feels like they have enough – but even when you spend half the day in bed, it still isn’t enough for me.
I’ve always needed a good ten hours of sleep, but that’s grown lately as pain interrupts my slumber and stops me getting a good run of deep, good quality, sleep. Now, I spend 12-14 hours with my eyes closed, either dreaming or hoping to be.
It’s not 14 hours of blissful sleep – the last 3 or 4 hours are spent dozing in pain, even dreaming about it. From the moment I lie down, my lower back is conspiring against me. When I wake in the small hours, the pain is bearable, but by the time my husband and dog wake at 6.45am it hurts to move, so much that I have to hold the bed frame and lift myself between positions, rather than daring to roll from one side to another.
Other people just don’t get it. When I hand my phone number to people I ask them to note “afternoons only” next to it. The response is usually envy “Lucky you, I’d love to be in bed for that long!” – missing the point that only I’m in bed because I need the extra sleep. I can’t function without it. I certainly struggle to get out of bed any sooner.
My friend Anne lives with a sleep disorder, so she knows how I feel. “Basically I am sick of people saying they wish they could sleep anytime (er, no they don’t). I think people don’t understand because it’s a more extreme form of something that affects us all – just as people don’t get that depression isn’t just feeling a bit sad, they don’t get that sleep disorders aren’t just being a bit tired, and I can’t just try a bit harder to get up.”
Needing so much shut-eye is a real inconvenience. Because I’m only up for 10 hours, I have limited ability to work. I certainly couldn’t fit in an 8 hour day. Like everyone else I need time to eat, and to relax – and what about commuting time? Even being self-employed and working from home, the shift in working hours is unhelpful. By the time I start work, I only have three hours before the clients I’m chasing will clock off.
Anne’s situation is more difficult: “I spend mornings in a fog. I don’t want my workmates to know because I don’t want them to question my capability, or think I’m lying when I say the train was late. People do think it’s funny, and it’s hard to explain that it’s not. I sleep a lot at weekends to catch up…”
I can sleep through all sorts. Doctors’ appointments, meetings with friends…. alarms, the dog barking, the doorbell… I have to arrange that I will only meet up with people if I’ve already sent them a message to say that I’m awake. Otherwise, I’m dead to the world while they are patiently waiting in a cafe. Sounds amusing, but it’s frustrating to have to plan.
Of course I use alarms! I do want to get up, and I try to. This morning the first alarm went off at 10.15 – I have a vague memory of fumbling with my phone until it stopped sounding. The second alarm followed at 10.35, and I turned my bedside light and radio on in the hope of staying awake. No joy, because when the final reminder sounded at 10.55 it was all I could do to wake enough to turn it off. From there I dozed for two hours, through hazy memories of Queen, Elbow, an interview with the Pet Shop Boys, and news about bombing Libya. Frequently, the pain grew, and I hauled myself over to lie on my other side for a while, my body needing to get up but my brain refusing to wake.
Eventually, the thoughts became less hazy and more realistic – when I realise I’ve started planning some gardening in a coherent manner, it’s time to get up. I sit up, and discover that I’ve missed a call from my father which I really wanted to take, and it’s already 1pm. Yet again, I’m starting the day on the back foot.
I love the few hours a day when I really feel alive – but I can’t help thinking that this is how I used to feel all day, every day… I really need to function fully for more than a couple of hours, because I’m having to choose between activities – grocery shopping? Exercise? Or work?
So next time the alarm sounds and you groan at the thought of starting another day, think of me, and all the other people who would like nothing more than to be able to join you in it.
I have followed up to several stories I reported in the last year. Here are the updates.
The new Routemaster – if this is the future, I’m not on board
I revisted the Routemaster on 27 January and found that two poles had been moved so that it was now possible to get into the wheelchair bay more quickly. However, it was still a tight fit and there’s a lot of work to do! Transport for All attended and recorded my thoughts for the video in this article by BBC London News.
Life at Glastonbury
I received some lovely comments about my Glastonbury diary but I’m afraid I won’t be going to Glasto 2011… nor any festival, at this point. The fact that my powertrike broke at Glastonbury is part of it – if I want to go to a festival I’ll have to spend a lot of money on a power adaption for my wheelchair so I can no longer book tickets on a whim. I still hope we can go camping in 2011 instead.
Purple, blue or green?
Despite everything I said about my preferences for the green hotel, I regularly end up staying at the blue one because it’s on the same estate as a bus stop, supermarket, and pub – the others are just off the motorway and have no other facilities on site. The blue hotel still doesn’t hoover around the edge of the room. I am tempted to sprinkle glitter to see if they notice.
A guide to the Wii Fit for disabled people
These articles were very well received. I released a new video on 18 Feb 2011 showing two more games you can play sitting down and how to do so. In general, when playing an aerobic game sit on the edge of a chair and tap your feet; when playing a balance game, sit on the board and lean!
Kidnapped by the council
At last a good news story and one I am delighted to report – on Christmas Eve, Steven Neary went back home to live with his dad Mark – hopefully for good.
The police woke me in the small hours of the morning – not at my door, but in my street, around my car, and having closed off the road. It made me wonder how well I truly know my neighbours…
Dozing while my husband slept beside me, I heard the sound of a car alarm – just a couple of blips. There it came again. Then banging, thuds of a door being slammed and something being thrown around. I stumbled to the window, to make sure my car was secure. To my surprise, police in body armour and helmets were all over the street.
The entrance to our road turning was blocked by a police van, and I could make out the nose of an ambulance standing by on the High Road. Next to my car was a large unmarked Transit van into which men were unloading their kit. On the other side was a dog unit, its occupant being walked back down the road – the German Shepherd complained as they put him back in the van, and my own dog stood up and barked back. What a great way to wake up the neighbours at 3am!
Plainly the police had been stealthy on arrival but less considerate as they packed up again. I’d obviously missed the “action”, but it was clear that they had been raiding a property further down my own cul-de-sac, or the close behind my house.
As I returned to bed, I couldn’t help wondering – terrorist, or drug dealer? Perhaps the target was a child porn ring, or an armed robber? Could it be the students at number 53, or the man who’s just moved into 19A? I quickly ruled out terrorism – the Muslims in our street are all family men, friendly and quietly spoken. Perhaps the woman who keeps herself to herself at number 70 has something to hide, or I should suspect the Lithuanian family at 86? Stereotypes swam into my mind, while I tried to work out how well I truly know the people in my street.
Those characters are ficticious. The people don’t exist and nor do the house numbers. But I do pride myself on knowing my neighbours – I’ve lived in this house for 8 years and am active in my local residents’ association and neighbourhood watch group. I can’t leave the house without running into people I know – in fact for one week I counted, and found that during a 20 minute walk with my dog, I’d run into an average of seven people who’d say hello, two of whom would stop for a chat. A few of my neighbours have become good friends. These kind of reassurances made me think I had a good measure of the people living in my pleasant, peaceful, dead end street.
I’m not surprised to learn that “busts” and “raids” can happen anywhere; everyone’s got to live somewhere, after all. But it’s always a shock to look out of your window and see a street full of policemen, especially if they feel that armour and dogs are necessary. I do love the area where I live, particularly as so many people open their doors to me – but now I’ll be wondering a little more about what goes on behind them once they are closed.