Why would a self-professed atheist like me join a hymn singing marathon? Read on to find out how I spent my weekend…
A twitter friend is the organist of a local church. When she announced a 30 hour “hymnathon” to raise money for organ repairs – singing every hymn in the New English Hymnal – it caught my imagination, as someone who loves choral singing. But I didn’t yet know exactly which hymns the book contained. I signed up anyway, and invited my friends to be “organ donors”. Kathryn wrote an article explaining why it was so necessary to restore the instrument she played.
My research told me that the original English Hymnal was edited by my favourite composer, Ralph Vaughan Williams – himself a non-believer. This had been superceded by the New English Hymnal in 1986.
On Friday I wheeled myself through the door of St Andrew’s. I’d been afraid of a reverent “bless you for coming” but instead the atmosphere was light and informal. I was told about the free food for singers, and invited to buy raffle tickets. I greeted Kathryn, observed the notes for singers (sing in parts as you wish, but in unison for the last verse) and took my place, ready for the three hours that I had volunteered, and promised to my sponsors.
At one point there were as many as 7 of us… at other points it was a duet, and the other girl happily said “I’ll follow you” but I was sight reading… *gulp* – and of course part singing went out the window! Luckily nobody criticised my growling! I am now familiar with ALL the hymns of Easter, Ascension and most of Pentecost. I particularly enjoyed Now The Green Blade Rises, an interesting tune and words that symbolise spring and new life.
Parishioners were present at all times so we had a small audience, which was nice. They were encouraged to sing too, which surprised my husband when he arrived 45 minutes before I finished! (I think he busied himself with his phone.)
Time flew by, and my voice began to tire. At last my three hours were up, and I left – Kathryn still flitting about between singing, playing, and greeting!
On Saturday, I felt a need to attend the finale (pictured). It was partly a wish to see things through, and also a desire to see which hymn had “won”; sponsors had been asked to name their favourite hymn, and whichever took the most money would be used to close the event. I slotted into position, this time next to twelve other singers and a second organist, to learn that there had been a tie. Jerusalem (which my atheist supporters had backed) took the same amount as Be Thou My Vision (obviously significant to others). We sang them both.
And that was it! Kathryn had done a fantastic job organising (and was still speaking coherently after 30 hours) and I was delighted to see that the event had been welcoming to believers, atheists and agnostics; to people of all ethnicities, gender and ages; and made me feel an important part of proceedings. Surely this is the point, speaking as an outsider, if a church is to remain current – it must represent everyone in its parish and make them all feel comfortable to be there. Maybe I’ll pop into the church’s cafe in future.
The total on Monday morning was £5k. Not bad for a handful of musicians, two dozen singers, and other volunteers. But the total needed is £25k, so the fundraising goes on!
My part is over. Now it’s your turn – if you’re able to support the hymnathon, please go to my JustGiving page and give what you can afford. I know that any contribution will be valuable in supporting choral singing within my community.
I take a number of tablets every day. I’ve more or less given up respecting which are due every six hours and which every eight; I take them all every six hours and hope that things even out while I’m asleep. But that’s not what I ought to do. So would you like to write me this app?
I need far more than just a few self-set alarms on my phone! I’d even be willing to pay for an Android app, if it does the following:
- Records the details of at least 20 medicines and the intervals in which they may be taken. This is important because phones and even special pill reminder machines only have 5-8 alarms that can be set. I have 11 meds which I need to take every other day, daily, twice daily, every 8 hours, and every 6 hours. Moreover, if my nausea is really bad when I wake, I take a tablet that can only be repeated every 8 hours. If nausea is less bad, or dizziness is worst, I take one that repeats every 6 hours instead. See how easy it is for even an intelligent person to cock this up?
- It should respect phone settings – not alarming when phone is off, going to silent or vibrate when ringer is set to this, etc. but still showing on the screen.
- I would like to turn off the alarm, by telling it “I’m going to sleep now” and to turn alarms back on by telling it “Im awake now”. At the point of being told I’m awake, it should tell me which meds are due and restart the countdown for each med at the point that I say yes, I’ve taken them. I guess if the phone is turned on after a period of being off, it should also check then whether any meds are now due (is that even possible?)
- “Ive taken meds” should require a tap to confirm, in case I fell asleep again / got distracted after it reminded me they were due. Not sure how we deal with choosing not to take some – maybe there could be an option for each med to say whether it is regular or optional, and whether you want to be reminded about it whenever it can be taken, or only if it was already taken that day? Maybe an “I’ve taken all of them” button but also a “let me tell you which I’ve taken” button which then leads you through each med that was due – have you taken this (y/n)?
- There needs to be some way of dealing with a reminder to take meds when I don’t have them with me. Maybe options like “I’ve taken them” “Remind me again in 10 minutes / 30 minutes / an hour”
- It would be useful to be able to press a button and find out “What can I take now?” – for example if the pain is really bad and I want to know if I can take that extra NSAID or not. Particularly useful for people who have some meds which are optional and only taken as needed, so they may not be regularly reminded, but are an option if necessary.
- It should keep an inventory. That is, each med should be able to be programmed with how many tablets you have, and how many you get per prescription or packet. Then when it thinks you have taken enough that you have only enough for a week at maximum dosage, it prompts you to get a repeat prescription / buy more. The inventory must allow for tablets which are taken two at a time. For example I have 2 x 30mg dihydrocodeine as I find it acts faster than 1 x 60mg.
So in summary
…Alarm options should be “Not taking any” “Remind me again in…[10 mins / 30 mins / 1 hr]” “I’ve taken some [leads you through which ones]” “I’ve taken them all!” and it should reset the countdown for each med at the point you confirm having actually taken it, rather than the time when the alarm went off.
…General features should be buttons saying “I’m [awake / asleep]” “I’ve taken something extra!” (for tablets taken as and when, or not every day) and “What can I take now?” as well as a med management menu (add / remove / edit a med)
…Settings for each med should be name, interval when it can be taken, number taken at once, remind or not?, and how many you have left. All of which can be entered / configured by the user.
So, do any of my geek readers have the ability and time to make such an app? I’d be glad to test it!
And my disabled readers, would this be useful to you? What would make it more useful?
There is a petition doing the rounds, complaining that a wheelchair user cannot be seated with their family at the Paralympics because at the time they tried to book, the only available seating was a wheelchair bay next to a single seat. Several people have sent me the petition, assuming that as a disabled person myself, I would agree with and sign it. In fact, I think it is spurious to produce this complaint just two weeks before the event, and that if you want to campaign, there is a better time and reason to do so…
Why this campaign is badly timed
Tickets for the Paralympics went on sale a year ago. At the time I, as a wheelchair user, was told that every effort is made to keep wheelchair users with their friends. But with only two weeks to go, trying to buy tickets and finding there isn’t a space where your whole family can be accommodated around you is hardly a surprise. The time to complain – if it was relevant – was a year ago.
The tickets have been sold. The Paralympics will be set up for the seating that has already been purchased. They won’t change their set up at a fortnight’s notice!
A wider campaign?
I attended the Olympics and at both the venues I found that wheelchair bays were next to a seat for your PA (assistant), and so it repeated: bay, seat, bay, seat. This is ideal for couples or single wheelchair users who may or may not have a PA, and a free PA ticket was included with every ticket for a wheelchair user.
This is also the way it works at Wembley normally, at many gigs and festivals. If complaining that you can only take one person with you and not your whole family, why not make it a wider campaign, to tackle the policy in general?
Provision for disabled people is always limited (as are regular tickets – there’s no infinite supply) and so space is at a premium. Sports grounds and venues have a set number of spaces for wheelchair users. Festivals will build viewing platforms to accommodate the tickets they have sold to disabled people. Although I think most events have the balance of accessible seating right, because wheelchair spaces are usually last to sell out when the normal tickets are all gone, I have still experienced a crush on a viewing platform, where there wasn’t even space for my PA, only for wheelchair users themselves. So actually, I would rather that you could not bring your family onto the viewing platform or into the wheelchair spaces. Your children could be denying a ticket to a needy wheelchair user who could have used it instead.
So what’s the solution?
When I attended the Oval last year, I was allocated a wheelchair bay and a seat next to it for my PA. My friends were accommodated in the row immediately behind us, so that they didn’t take up any wheelchair spaces, but we could still chat together when we wanted. Many venues will sell tickets in the row immediately in front or behind for the rest of your friends or family, so you can still be near each other and pass around the sandwiches. This is ideal – everyone together, with no abuse of a wheelchair space by an able bodied friend. If the venue you’re visiting won’t offer this option, that is the time to complain – and campaign.
The Olympics is over, but the venues are being transformed ready for the Paralympics in a couple of weeks. The Olympics was undoubtedly a success from a sporting perspective, but how was it for those of us who live within a mile or two of the venue?
- Our high streets have been improved. In Leytonstone the High Road was redone which meant pavements repaired, new street trees, ramps at the entrance to every side turning making a smooth path as you walk down the main road, and basically the whole street scene looks better and is nicer and easier to walk or drive along. In Leyton businesses had new shop fronts and a lick of paint so the whole street looks smarter. And in Stratford itself there was “Operation hide the concrete shopping centre from the 60s” as colourful shapes appeared in front of the more ugly buildings. I doubt any of this work would have happened so soon or so comprehensively if it was not done to make the area look attractive for the Olympic visitors.
- There were local events inspired by this being Olympic year. As a choir member, I’ve never known so many opportunities to sing! I’ve performed at a music festival in Waltham Forest, at a council run Christmas “Winter Wonderland” and even in the Olympic Park itself, singing opera in the media centre. Many of these opportunities involved singing with local school children, in the vein of “inspiring a generation”.
- There were some free tickets available to local people. For example Waltham Forest council gave away tickets to over 60s. I’ve also heard of free tickets for some local schoolchildren.
And good things about the Olympics themselves – as well as being a wonderful event, the army were charming and friendly while undertaking security checks, the volunteers were happy and helpful, and free travelcards were sent with every ticket, a great idea. It all made a good impression of London, and hopefully showed that East London is a great place to be.
- The army put a missile on a tower block near my house! This was ostensibly to shoot down a hijacked plane if terrorists should try to attack the Olympic venues in that way. As a pacifist, I find this kind of thing frightening and unnecessary. I don’t want to see the army in my neighbourhood streets.
- Parking – every residential street has had a permit parking zone imposed upon them. Although residents can register for a free permit, it’s only for the specific area in which you live. And although people in my neighbourhood have largely got to grips with this, when the bays for these parking zones were created, some of my neighbours were given parking tickets if their car was in the way. Apparently the council put notices on cars and through letterboxes, but not everyone received one.
- Police with machine guns at stations and near the Olympic Park. This might not be a surprise to people from other countries, but in the UK our policemen don’t routinely carry guns, nor do members of the public, so it is always a small shock to my system when I see one.
- The Leyton “Olympia Market”, set up to provide food to passing Olympic visitors, has been a complete flop. None of the designated walking routes to the Olympics went past it! The traders have lost thousands of pounds as a result.
- The cost and difficulty of getting tickets. I was desperate to see some of the sport on my doorstep, and I’ve already detailed my Olympic ticket marathon in an earlier article.
It was also difficult to get to Stratford: as a wheelchair user I can’t get on the tube at my local station. I have to get a minicab to Stratford to begin my journey – Olympics or not! However, police were forbidding any vehicles from stopping to set down, even when I explained I am a wheelchair user. So we couldn’t stop at my usual place and instead I had to be dropped some distance from the station. You’d think a drop off point for disabled people would have been made available.
But some things haven’t been nearly as bad as expected. The traffic was terrible on day 1 of the restrictions, but Transport for London reacted and made changes so that it was manageable thereafter. Even when there were queues going down the High Road, these were clearly not local drivers, because the rat runs were clear and I could quickly get around the queues via back roads.
On balance, I’d say the Olympics has been good for the area. Improvements to the area will remain long after the Games has finished. The Olympic Park itself should become a lovely place to visit, and the Athletes’ Village will provide new homes in due course. We just have to brace ourselves a little longer, while the Paralympics takes place.
What do you think? Do you live near an Olympic venue? Have your experiences been good or bad? I’d love to hear your views.
This weekend the Stratford shopping centre, Westfield, has been closed except to visitors with an Olympic ticket, for fear of overcrowding. Yet neighbouring areas Leyton and Leytonstone don’t seem to have any extra visitors – even though they’ve been spruced up for the Olympics. If you’re visiting east London, here’s why you should try shopping just a mile or two from Stratford…
Leyton is almost walking distance from the Olympic Park. I lived there for many years and yet I don’t recognise it nowadays. Shops have been given a facelift and the buildings are coloured and attractive. To be fair, Leyton doesn’t have a huge heap of reasons to recommend it – it is just another suburb of London, with all the shops that you might want along with a trading estate, so you’ll find at least one large supermarket, clothes stores like TK Maxx and Next, and a few cafes. There’s also a pop-up pub in the Town Hall, where you can watch the Olympics on TV. If you’re staying nearby and need to stock up, you could do worse than Leyton. It’s a friendly area with plenty of “blitz spirit” where the older neighbours still chat to each other on the street. There’s also a temporary market which is complaining of being quiet – why not give it a go?
Leytonstone is a little further away, two stops from Stratford on the Central line. It’s where I have lived for a decade and an area about which I am passionate. This is where everyone should be coming! We have high street stores such as Argos, Boots, Superdrug, Primark and Matalan, a big Tesco, and lots of independent traders. My favourite is the Engine Shed, a Hornby and modelling shop. However I understand that Olympic tourists may not want to go home with a toy train! We also have some fantastic cafes – I recommend Horizon on the High Road, with hot chocolate to die for and a wide range of patisserie and main meals, as well as Cafe Montmartre in Church Lane, which sells homemade chocolates. Both of these are within 2 minutes walk of the tube station.
There is also a thriving arts scene in Leytonstone. In Church Lane you can visit Stone Space Gallery (currently showing an inspirational group exhibition called Wandering Rocks, open Thursday to Sunday), and next door is a window display space displaying a series of colourful prints inspired by a hospital stay. Not enough art? By the tube is Stone Space Projects, a temporary gallery, currently exhibiting a Peace Quilt with squares contributed by children, one from each of the countries participating in the Olympics. The North Korean square was snuck out of the country, and there is even one from Iran. The whole thing is inspirational and well worth viewing (until August 10, 11-5 daily).
Need to stop for food in Leytonstone? I recommend The Olive, a wonderful Turkish restaurant near the tube station, which provides affordable and delicious food (my favourite is Mucver, feta and courgette fritters served with tzatziki). Need a drink? Stop at CAMRA’s East London pub of the Year, the Red Lion, which has real ale, a beer garden, and provides highchairs, dog biscuits, and disabled access. Fancy a walk? We can offer green space in the shape of Wanstead Flats and Hollow Ponds, both a part of Epping Forest. If you fancy testing your athletic prowess, you can hire a rowing boat on Hollow Ponds or enjoy a 5km run on Wanstead Flats.
To be honest, you will get much more of a feel for the East End by visiting Leytonstone (and to a lesser extent, Leyton) than sitting in a soulless hotel in Stratford. The council has spent a lot of money revamping our streets and pavements – the least you can do is come to visit!
I roughed out this article from bed over a week ago. It’s taken this long for me to have both the physical energy and mental stamina to type it up. Ironic, then, that I was writing about how hard it can be to manage a fluctuating condition…
When I was a teen, my best mate had chronic fatigue syndrome. We would often make plans to meet up, but often I would receive a phonecall just as I was putting my shoes on or getting ready to go out, saying “I’m really sorry, but I can’t”. I stuck with it – I trusted and believed my friend – but I didn’t really get it.
Now I’m in that position. I get it, alright. So let me explain how it is, why I can be unreliable and prefer to say that I will let you know how I am on the day. Or perhaps we made plans, had fun on one of my “good” days, and now you’re wondering if I’m really ill at all?
Weeks 1-2: I was ill, with exhaustion and a nausea that stopped me from eating. I thought “Ok, I’ll cancel plans, and when I’m over this bug I will reschedule everything”. No problem, after all everyone gets ill now and again.
Weeks 3-4: Shit, I’m still ill. I’m spending more time in bed than out of it. What’s going on?
Month 2: Think “I’m clearly still ill… I’ll see the doctor.” Of course, I can only get to see the doctor when I’m relatively well, so I can think coherently enough to make the appointment, and drive myself over there. My GP says we will “watch and wait”. So I agree, thinking “this is inconvenient, I won’t reschedule things yet, I don’t want to let anyone down.”
Then I had a good week. “Hooray! I am cured! Reschedule everything!”
A few days later the fatigue hit me again. Oh, shit.
Eventually you look back over your diary. In my case I had the horrible realisation that not only was I still ill, but that I was still getting worse. But I couldn’t just cancel life. So I arranged to see a few good friends again, with the caveat that if I was ill, I could take a raincheck on the day. However, some places – medical departments, hairdressers etc. – require advance booking. So I made plans, in the hope that they would work out. However, it was time to write to my GP, to let him know why I cancelled an appointment two weeks in a row – I couldn’t get out of bed. He needed to know how bad things really are for me, even if he couldn’t do anything about it other than repeat that we “watch and wait”, a phrase I have grown to hate.
You come to realise that you have no control over your life. And aside from the depression of not being in control of your health or your capacity to do things, you think “how can I take the power back?” Nobody seems able to help. It is now month 9 for me and there is no sign of my illness easing.
As someone who (also) has a long term disability (a painful joint condition affecting my mobility) I already knew about pacing: the principle of working within your limits, knowing that if you overdo it – whatever that may mean to you – that the next day will inevitably be a day of pain, exhaustion and enforced rest. Infuriatingly, I can’t get this theory to work in reverse…
So if I have a medical appointment, or even if I want to go out with friends, I know that I must keep the following day clear for recovery. But even if I rest for the day before an appointment, it is no guarantee that I will be alert and ready to go on the day itself! I don’t know whether I will be well enough to get myself across town to the hospital department, despite all good intentions. And last minute taxis are expensive!
That’s why I’m unreliable, a flake, or whatever you’d like to call me. I’m at the mercy of my health, but if I’m unwell it’s not because I’ve been irresponsible, overdoing it or pushing myself too far – it’s just bad luck. When I say “I’ll come if I can” or “I’ll confirm on the day” then you know that I want to see you and I’ll do everything I can to be there, but sometimes my will is not enough.
It’s not all doom and gloom. As long as you don’t want to meet me before 3 in the afternoon, or to travel far from home, then chances are good that I will make it. This week I’ve hosted a friend (who had a 90 minute commute to see me, bless her), visited a local art exhibition cum party, and been out for dinner with family. I’ve also spent a lot of time in bed, in pain, or both, but at least that’s not been the whole story and I’ve made some happy memories along the way.
Chronic fatigue is one of those conditions that people don’t seem to believe in, until it happens to them… I see friends and acquaintances thinking this, not liking to say it until I do, whereupon they look relieved and agree. But whatever the cause of my symptoms, the illness has certainly struck me down, and all I can do is work with it. Fighting will just wear me out, and achieve nothing.
Whatever their diagnosis, if you have a friend with a fluctuating condition, please give them patience and understanding in the knowledge that it is probably frustrating them far more than you can imagine. And your continued friendship and support is probably one of the things which is keeping their hope going.
A few weeks ago, I wrote up some tips for cyclists on the Dunwich Dynamo. My husband completed the ride on Sunday morning, so I have invited him to guest post. Here are his thoughts and experiences of the trip.
Last weekend, I did the Dun Run. For those who don’t know, it’s a bike ride from London to Dunwich, leaving Hackney at 8pm and arriving 116 miles away at the beach the next morning.
You don’t get to see glorious countryside (well, not until the sun rises) but it’s fantastic fun. These are some of my impressions from the night.
One of the most memorable things from the ride is the “river of red”. As you cycle along, you’re following a bike in front, with a red LED blinking, and they’re following a bike with a red LED blinking… and so on, until the next bend in the road. But sometimes, as you crest a hill, you see a bigger part of the river – the twinkle of red swooping down a hill and working up the other side of the valley until it reaches the horizon.
And you know that even though you can now see miles of bikes, this is a small portion of the red river. If someone stood there and watched, they’d've already seen the river flow past for hours, and they will still see it for hours to come.
Every time I saw the river reach the horizon, I grinned. I grinned a lot.
I’d set off with a friend and FOAF, but by the time we reached Woodfood, I realized I’d be frustrated with the pace. So I said something like “I think I’ll head off at a faster pace – see you at the end. Of course, this means you’ll pass me in 20 minutes when I’m fixing a puncture!”. They chuckled good-naturedly at my unfunny quip, and off I went.
Do Not Taunt The Puncture Fairy.
I’m not saying she’s a bitch, but she does have teeth sharp enough for my “puncture proof” tyres – I guess they’re around 4000 miles old, so they’re not exactly fresh, but hardly worn down to the canvas.
Of course, it was the rear tyre of my hub-geared bike, so it took me a while to fix. Luckily it happened outside a village hall, so I could use the light of the kitchen window to sort it out by, and I could overhear the locals chatting – and have a chat myself.
The locals were a mix of baffled, bemused, (“you’re cycling where? for fun?”) and genuinely entertained by the sight. I got a fair few “good luck” wishes as I set off again. Only to stop, swear, and realign my back wheel.
In my one previous longish run, I’d navigated by poring over google maps before I set out, checking the route out in the google map app on my phone, and then pausing at junctions to check out where I was going now and for the next two or so turns.
This worked really well, and I was prepared to do the same thing.
But on the Dun Run I just followed the river, too lazy to check out the route in the way I had planned.
This was a mistake that added – I guess – 7 or 8 miles to my journey (and around 100 odd others who made the same detour that I did).
As a tactic, it also failed because during the day you see so much more – it sounds obvious, but it’s surprising how limiting the darkness is.
The patch illuminated by your light is where you are going, and generally this is not towards the pole holding up the road sign, so they’re hard to read – something that I did on my test run quite a lot.
The ride starts in an urban area, and for me the shift into proper countryside happens when you turn right at Epping. As I approached that junction, the lights went red, and every cyclist stopped. There was no real traffic to drown out the noise, so as the lights went green, all you could hear was the sound of a hundred cleats clipping into the pedal.
I don’t think I saw a single cyclist jump a red light on the whole ride.
The coaches put on by Southwark Cyclists were fantastically well done – dealing with a mob of flagging, sleepy, cyclists can’t be much fun, but it was expertly and efficiently done. If you’re doing it, I’d recommend getting the coach ticket. If nothing else, it helps prevent you from throwing in the towel before you get to the start…
Next year? I’ll do it again, but I can’t see my diary for next year yet, so maybe I’ll be busy – it may be 2014 before I pedal to the beach again.
When I do it again, I’ll:
- have a better pump. I didn’t get much air in the tyre, and while I’m sure there were track pumps about at the various pop-up roadside stalls, I didn’t spot them. My hand pump is good enough for getting enough air in the tyre to get home from work (especially given that I go past at least 3 bike shops that have a track pump chained up outside), but doing 80-odd miles on a under-inflated tyre wasn’t fun.
- strap a torch to my head to be able to see things off my path (e.g. road signs).
- be less lazy with navigation – following other people the wrong way is no excuse for getting lost.
- Get a coach ticket earlier! The Dun Run next year is the 20th-21st July 2013; coach tickets back will be sold via http://southwarkcyclists.org.uk from, I guess, around late April onwards.
I expect I’ll be asking the Mrs for an all-night pass next year – hope to see you on the beach!