Storm Thorgerson is one of the artists I admire most highly. He is known for creating amazing cover art on albums, particularly those of Pink Floyd, but he worked with a very wide range of musicians. When I heard of his death in April, I was struck by the strength of my sadness and sense of loss – given that this is not someone I ever worked with, and that I am just a “fan”.
I wanted to say something to mark the occasion, but the words didn’t come to me. Then this evening I received an email newsletter from Storm Studios. Normally written by Storm himself, this time it came from his friends and colleagues. They described how they laid him to rest this week, “in sight of Karl Marx and his friend Douglas Adams”.
I instantly wrote an email in response, which I will share here by way of an acknowledgement of his loss. It is probably not the best tribute that I’ve ever written, but it was spontaneous and genuine.
To all at Storm Studios:
Thank you so much for this beautiful email.
I was everso sad to hear of Storm’s death.
I admired his work for many years – before I knew who had created these stunning and moving images on the covers of my favourite albums, many of which I’d borrowed from my dad’s record collection as a teenager.
In recent years, “Taken By Storm” was on my Amazon wishlist until a relative kindly bought it for me.
In 2011, I saw that Storm was speaking at the British Music Experience, and on a whim snapped up tickets. I am not desparately well myself but was determined to attend. Storm’s character was instantly clear, such an intelligent man, highly entertaining but also very perceptive. I was delighted to win a set of his postcards on the night, and for him to sign my copy of his book. Both remain treasured possessions.
It’s funny how much of an impact he made. From hearing Storm speak, I knew I would have liked to chat with him and get to know him, although I’m sure he could have been a taskmaster at times! I am also a huge music fan and his images were revolutionary, speaking to me through difficult teenage years right up to the current day. It was awesome to hear how he set up the photographs rather than merely creating something in Photoshop… my favourite has to be the Division Bell artwork, where both the music and Storm’s images spoke to me.
So I found myself shocked and surprisingly upset when I read of Storm’s death. I didn’t know he had cancer, although it was clear at the BME talk that he wasn’t perfectly well; I was frustrated to find someone in the disabled toilet when I needed to use it, only to see that it was the man himself. I was tonguetied, but in any case it’s not kind to bother someone when they just want to answer a call of nature! I think I muttered something to his female assistant about how excited I was to be there and how I loved his work; something anyone could have said, but I did mean it.
I am so very sorry for your loss; Storm made a huge impression upon me, when I am only a fan who didn’t actually know him at all. Your newsletter was moving and sad, but appropriate, and it was lovely to receive such a personal note from people who knew Storm so well. Thank you for sharing your thoughts with his followers.
I wish you all the best in continuing with Storm Studios. And I will be looking out for The Gathering Storm later in the year. Storm was one of a kind.
Toxic January
Posted on: 2013-01-27
I didn’t drink alcohol last night. As a result, I found my pain almost unbearable. I lay awake in bed all night, in agony despite being cushioned by two double duvets, wishing I could sleep, wishing the pain would ease. I had no solution.
A good friend, Beth, an alcohol worker, has not been drinking in January. Instead she’s been raising money for Alcohol Concern, and been blogging about her journey. Her blog has reminded me that I drink to “harmful” levels, and made me think about alternatives. But so far, I haven’t found a solution.
I have good reasons to cut back on my drinking. As well as knowing Beth who is an alcohol worker, another friend is an alcoholic (now two years sober) and I have seen how not drinking has changed his life. Most crucially, I saw my dad get ill and then die of liver failure aged just 60. So I know first-hand about the damage that alcohol can do – to your social life, and to your body. If that doesn’t put me off, what will?
But it isn’t that simple. I have a chronic pain condition, and no medicines seem to provide me with adequate pain relief. In order to cope, I drink nearly every evening. I rarely get drunk, or feel particularly intoxicated, nor do I want to be: but I do exceed recommended limits. I just need to have a certain level of alcohol in my bloodstream so that I can sleep at the end of the day.
A friend with the same condition as me, David G, said: “When I did my Pain Management course, one question the medics asked was “Who supplements their painkillers with alcohol?” When half the class stuck their hand up, the only comment was “That’s about average.” In teaching us to be expert patients in control of our own conditions, alcohol was completely accepted as one of the tools available for responsible use.” So it is more or less expected that patients will use alcohol to help their pain levels. But at what cost?
I have tried stronger painkillers; buprenorphine, and oxycodone. They were good in that I didn’t feel a wish for alcohol when I was taking either medication, but unfortunately they each turned me into a zombie and I couldn’t take either on a permanent basis. I haven’t found anything else that I can take instead. So it was helpful to know that medics expect patients to use alcohol as a pain killer, but sad nonetheless.
I’ve seen the way that alcohol can destroy your body. Everything from yellow skin and needing regular blood transfusions, through to limbs seeping liquid from oedema; a midriff swollen by many litres of ascitic fluid, tight as a drum; regular gastroscopies to check for veins about to burst; and ultimately confusion, coma, then death. It is utterly horrid. It was a cruel thing to happen to my dad in the last few years of his life, taking him when he was barely 60. People whispered “it was no age” and they were right; and it upsets me to think that if I go the same way, I might only have another 20 years with my husband, who I love beyond compare. I have liver profile tests on a regular basis, but you don’t tend to see signs of damage until it has already been done. I just hope that I am luckier than my father.
I drink almost every night. By NHS standards, I drink heavily and I drink too much. For example I will drink a pint of Pimms (5 units) over a few hours, and then a Pina Colada (2.5 units) over another hour or so. That’s a quiet evening; I’ll often have something else as well. This is what I need in order to bring my pain to a manageable level, so I can sleep. The NHS thinks this is a “binge”.
Bearing this in mind, and inspired by Beth’s blog, I didn’t drink alcohol last night. As a result, I found my pain almost unbearable. The first night of not drinking is just about doable, but a second night would be impossible. You see, when I don’t drink for a night I am in agony. Every time I try to sleep, the stabbing pain jolts me awake again. I lie there trying to sleep, but whichever way I lie, it hurts. If it’s not my knees or hips shouting, it’s my pelvis or my ribs; they take it in turns to disturb me. I also flick between being too hot and too cold. My body is hypersensitive and my pain levels are up to 11. When my husband reaches an arm around me, I have to move him away, because it is even painful to be touched.
It took me until morning before exhaustion overwhelmed me and I finally got some kip. I slept from 8am until afternoon. When I woke up, I was in agony again. This doesn’t happen the morning after a night of drinking. That’s so unfair, it’s like being penalised for doing the right thing! So if I want to give up alcohol, I first need to find another way to handle pain.
I have asked my medics. I can’t take stronger painkillers because the patches damage my skin and tablets turn me into a zombie. They have said I shouldn’t take anything more than codeine. But to me, that is like a sticking plaster on a gaping wound; better than nothing, but only just.
I don’t know how to end this article. You see, I am frustrated that I end up drinking to help manage my pain, but I don’t know any other method, so I will continue to do so… even though I know it is probably harming my liver, and I really don’t want to end up like my father.
I can’t find an alternative. My immediate, day to day need is to minimise pain. My long term aim is to minimise damage to my body and to plan for my future. But until I find a way to replace alcohol as a painkiller, I am just running on the spot, and hoping not to do myself harm in the process.
Beth’s blog is http://bethanfisher.wordpress.com. Please read about her experiences of a month lived sober, and consider sponsoring her for Alcohol Concern.
My voice from the past
Posted on: 2013-01-07
Today I received an unexpected email. Five years ago I’d written this missive to “future me”, and it was delivered out of the blue, completely forgotten. So what did it say, and how accurate was it?
“Today is 7 Jan 08” I began. “Bill Gates showed off a coffee table with a touch sensitive computer in it and reckons in 5 years’ time there will be ‘tens of millions’ of people sitting around them in their lounge.
“So here you are, 5 years on – amazing things will have happened like the Olympics, and like Leytonstone tube getting more accessible – so, have you got an interactive coffee table yet?”
Wow. Touch sensitive coffee tables eh? Well, I’ve got a tablet that I use in bed or in the lounge, and a smartphone of course, but that’s as touch sensitive as my house gets! Cynically, I googled “touch sensitive coffee tables” only to find an article – dated today – about a new giant tablet which will act like a coffee table, or even an air hockey game. But it isn’t an actual coffee table – that was just an analogy for its size. So I suppose Bill Gates is hoping nobody remembers what he said half a decade ago!
I wish I’d been more insightful, more detailed. Instead I referred just to “amazing things… like the Olympics”. Well, it WAS amazing, and living near enough to hear the closing ceremony fireworks from my house, it was exciting too. I spent two very enjoyable days at the Olympic Park (one watching Tom Daley grab Olympic diving bronze, another seeing Paralympic heroes Oscar Pistorius and David Weir in the stadium) and benefited from other 2012 events such as New Year fireworks, and seeing my current favourite band Tom Williams and the Boat performing live at an east London park.
But my local station remains inaccessible to me; there are stairs and no lift. I still have to get a minicab to Stratford in order to get onto the Underground. The thing I failed to predict was Ken Livingstone being ousted as Mayor of London. In came Boris, and out went many promises on which disabled people were depending. He shelved plans to make my local station accessible to me, saying there was no money… while I still have to fork out a fiver for each cab ride to my nearest accessible station.
Therefore, my first hopes for the next five years are that Boris loses the next Mayoral election, and the Tories lose the next General one. Budgets and benefits have been cut beyond what some people can cope with, which is shocking and depressing to see.
There were other sadnesses that I didn’t predict. After more than two years of illness, my dad died in 2011. Then last year my 12 year old greyhound succumbed to cancer. I don’t feel ready to lose anyone else close to me, although my nan-in-law is in her nineties…
Perhaps the next five years will bring opportunities to travel and relax. I got ill in 2011 and I’m still trying to manage my health challenges now, although I’ve now got the assistance of some great specialists. My immediate priority is a holiday, and then when I’m well enough, a puppy!
I’d also like some more opportunities to speak on TV and radio; this is something I didn’t predict, and which really began in 2008 when I was featured on Countryfile and The One Show. By 2012 I’d also been on Radio stations 2, 4 and 5, loads of local radio programmes, BBC World, Sky News, and on BBC Breakfast TV – though each only for a few minutes at a time. Hopefully over the next five years I’ll get more chances to share my knowledge and experiences with the world! If I could one day make my living in that manner, I’d be delighted.
Those are my hopes for the future – what are yours? Do you have a prediction for how we will be living in 2018? Perhaps you can help me reach my goals in some way! Let me know your thoughts.
My guilty pleasure – adjudications!
Posted on: 2012-11-13
I spend every Wednesday – and every other Monday – scouring certain websites as soon as I wake.
Many years ago I devoured The Railways Archive’s repository of train accident reports – intrigued by those that happened in areas I know well (such as the Taunton Sleeping Car Fire where pupils, from a school I would later attend, gave assistance) and my eyes opened by others, how one simple error could lead to disaster. They were a horrific but fascinating set of reports, often harkening back to a bygone age.
But eventually I read up to the present day, and new reports aren’t published often enough to sate my interest. Then I discovered Ofcom – who manage complaints about TV programmes, publishing fortnightly adjudications in a Broadcast Bulletin – and the Advertising Standards Agency, who make weekly rulings on pesky advertisers. At last I can bury my nose in adjudications on a regular basis! Better still, they are often entertaining.
When I open an Ofcom report, I try to guess why the programmes concerned have caused problems. An unbalanced news report? Swearing on reality TV? Too many adverts on a shopping channel? Revealing too much flesh on a pay TV programme? I delight in the formal descriptions of what exactly happened, the minutiae of the offence.
My favourite complaints are those from individuals, preferably which have not been upheld. Usually these are people whose misbehaviour has been featured in a Watchdog-style exposé, or they took part in reality TV but now regret how they acted and retrospectively claim they never consented to be filmed. Their complaints are often unintentionally hilarious, ridiculous and clearly unfounded.
So that’s what I look forward to reading on a regular basis. What’s your guilty pleasure?
The Liverpool Care Pathway has been in the news lately. It’s a care path for people who are dying, whereby invasive treatment is withdrawn and they are left to die peacefully. At least, that’s the principle. It isn’t what my experience found.
A few years ago, a relative of mine was put on the Liverpool Care Pathway. It was explained to my family that he was expected to die, so invasive treatment would be withdrawn, medicine would be stopped (as it wasn’t working, so it was redundant) and that we would be left in peace to spend time with our relative before the inevitable happened. It was presented as the best, and normal, thing to do, and we numbly went along with it.
Some advantages were clear right away; curtains were pulled around our relative’s bed and a “Do not disturb” sign placed outside, so that we were not interrupted by staff asking whether the patient would be having any dinner. We were given permission to come and go as we wished, beyond regular visiting time – and my family began a vigil so there was always one of us present at the bedside.
The heart monitor, which I’d been watching in a daze, was removed – this was a good thing as I stopped focusing on that, instead focusing on my relative. Medicines were stopped. This was all as expected so far. But then my relative’s feeding drip was removed. We weren’t expecting that! I didn’t consider the drip to be invasive – fair enough if it had fallen out, then I could understand the need to discuss whether it was replaced. But it had at no point been made clear to us that liquids and nourishment would be removed – in contravention of the relative and carer leaflet about the LCP, which refers to maintaining the patient’s comfort, and says decisions about food and drink will be explained and reviewed regularly.
This aspect of the LCP has been in the news recently, with one report saying that a patient even rang the police so he could have a drink of water. Should patients be parched and famished as they die? It seems inhumane, something you wouldn’t even do to a dog! If I’d known that my relative’s nourishment would be removed, I would have challenged putting him on the LCP. If a drip is in place why not leave it? No one wants to die thirsty.
After a few days of our 24 hour vigil, to everyone’s surprise, my relative woke up from his coma. Suddenly treatment was reinstated with all haste. And do you know what? He was hungry.
The Liverpool Care Pathway is about convenience, not about care. In my view it’s about making the time before death easier for the living, and for the medical staff who can then spend their efforts on other patients. That’s not good enough in my view, and I’d never support it again.
Choral singing for a cause
Posted on: 2012-10-16
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.
- In: Disability
- 7 Comments
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?
