A pyranha appeared in my colleague’s pint yesterday.

A Worth-y Memorial

I have just watched the first episode of Call The Midwife, BBC One’s six-part adaptation of Jennifer Worth’s memoirs of her life as a midwife in the East End of London in the 1950s. I have to say, I’m really, really happy that BBC have done such a wonderful job.

I think it was some time in the early summer of 2008 that my affair with Jenny Lee (the young Jennifer Worth) began. I was going to the USA for a conference and a short holiday and so I went with a friend to a big bookshop to find suitable material to take with me. On the “Bestsellers” shelf a book “Shadows of the Workhouse” caught my eye - workhouses, prisons, hospitals, great houses - I love the memoirs of people who have worked in them or books about their histories. I bought it without really paying much attention to the subject matter other than that it was set in the East End in the 1950s, and was the memoir of a midwife. That midwife was Jennifer Worth, or Jenny Lee as she was in the 1950s. I took the book with me to the US and whilst reading it out there, I found that it was actually the second in a series.

At the end of my trip, I was scheduled to fly from Newark to Amsterdam and then on to the UK, overnight. I got to the airport in plenty of time, took my illicit supply of Valium, fell fast asleep on the plane only to wake up 3h later to find we were still on the runway - some storm had delayed us. Eventually we made it back to Amsterdam but, annoyingly, we had gained time and I now had 4h to wait for my connecting flight. My iPod battery was dead, my laptop battery was dead. I was dog-tired and grumpy and so settled down and read “Shadows of the Workhouse”. I’d not read beyond the first chapter thus far but I read the entire thing, cover-to-cover in 4h and was in tears by the end.

Seldom does a book reduce me to tears but this one managed it! I can’t say why because it would be a spoiler but as soon as I got home, I ordered the first book in the series “Call The Midwife” and devoured it in hours again. Worth writes in a very evocative way and brings the world of the 1950s East End back to life with all the sights, sounds and smells described in perfect detail. Every character right down to the meths drinkers and whores were loveable in some way. One thing that struck me was that Jennifer, even in her early 20s and a complete fish out of water, never judged anyone. She treated every patient with the professional dignity that was drilled into nurses of the Old School and never once cut corners or complained. Ok, she vented with her colleagues - but that’s normal. Her professionalism is a lesson to everyone, I think.

I later read the third instalment, “Farewell To The East End”, which tackles the slum clearances and the replacement of tenement blocks with tower blocks and the subsequent issues that arose from that. Jenny eventually fell in love, married and moved on from her career in midwifery to have children and then took up studying the piano, I assume to pass time whilst her children were little, but she was eventually of an extremely high grade. She then worked as a night sister and various other posts in hospitals for some years before giving it all up for her music.

I found out not too long ago that Jennifer had written another book - this time one about death and dying, entitled “In The Midst Of Life”. It took the form of a series of stories about people that she had nursed through death, their families, her own family members - the essential point being that 100 years ago, we let people die. Now, we try to prevent that, even when someone is clearly going to be dead, say, in a week, we will intervene to make sure they stay here that long. We give treatment for cancer that prolongs life by weeks or months but also prolongs suffering for the patient and family, even if perhaps they don’t realise it at the time. I don’t agree with all of Jennifer’s view in the book but it is indeed very moving and fascinating and I think something everyone in the medical profession should read.

I became aware that the Midwife Trilogy, as they are know, were to be made into a BBC drama - I was very happy to hear this since they are books that almost read as a screenplay - you can see it all on TV as you read it. The BBC seem to have done a lovely job - which I will expand more on after the second episode but I strongly recommend both the books and the series.

Jennifer Worth died in 2011, having never seen the TV adaptation of her memoirs, but it is so true to her original work that I think it is a great memorial to her and her wonderful books.

A Sea Of Boxes

That’s what my life has turned into. I am moving to Plymouth in just a few weeks time now to take up a new job there. My office at work is a sea of boxes of my books, lab equipment and suchlike and my front parlour at home is similar. Removal men will be packing everything for me the day of the move but there’s stuff I want to do myself.

Never offer to take up a job so quickly that you have 8 weeks to pack your shit and move 200 miles whilst finishing off a lot of laboratory work, a patent and writing two manuscripts whilst reviewing and editing a dozen or so more. It is NOT A GOOD IDEA.

So, given the chaos, I’ll not be blogging until after I’ve moved really. I can’t justify the time. Still ranting away on Twitter as per normal, mind.

In Praise of Escherichia coli

Ok - this post includes frankly childish and graphic commentary on the effects of food poisoning - you have been warned! This is in response to two things - both extending from Twitter! One is that @flylilypad blogged the full version of something I’d laughed at that she’d done last week and so now it’s my turn I guess and also because @anglais_in_sete has similar problems at the moment and I thought a good laugh might cheer her up!

At Risk

Today being a Sunday, my alarms went off at 0855. First my iPhone alarm, then the radio alarm (BBC Coventry & Warwickshire), then SleepCycle alarm (on my iPhone too), all about 30s apart, for extra annoyance, which helps get me out of bed. Once I’m awake, I slowly propped myself up, checking for dislocations and subluxations that happen during my sleep. My right hand was a mess, as per, and needed cracking back into position. I seem to sleep on my front a lot at the moment, which crushes my right hand between my breastbone and the bed. I then took my first doses of pain relief for the day whilst listening to the 0900 radio news. I heard that Marco Simoncelli had been killed in a motorcycle Grand Prix accident. I’d never heard the name before as I don’t follow motorcycle sports - the only sport I pay attention to is the rugby and sometimes winter sports. After an hour or so of reading in bed I decided to read the BBC News website and saw a picture of a quite beautiful young man with kind eyes. It was him. I felt sad - the same way I feel sad when anyone young dies. Then I read about how it happened and the “that’s such a high-risk job” thought went through my mind. I once said this to a friend of mine who is now a Captain in the Army, back when he was a mere 2Lt. He was about to go on his first tour of duty in Afghanistan and I feared for him - though of course I never told him that - but I think he knew. He said to me “I know my career is dangerous - but look at yours!”. I’d quite honestly never looked at it before and I guess, yes, there are dangers. The poisons - arsenic, thallium, mercury, cadmium, FCCP, CCCP, DCCD, cyanide, diisopropylfluorophosphate - which is a close relative of sarin - all lovingly stored in neat alphabetical rows in a locked cupboard hidden away. The explosives - methane, propane, butane, picric acid - all in their sturdy metal cabinet. The radiation - carbon-14 and uranium-235/238, spewing alpha, beta and gamma radiation but shielded inside leaded perspex when not in active use. The physical dangers - dangling on a rope in a 30m pit, the bottom of which is lined with two iron girders; sitting in an underground chamber with deadly levels of carbon dioxide and hydrogen sulfide all around me; falling 2m onto solid rock whilst 40m underground in the wilds of Romania… The list goes on. I doubt any career or anything in life is truly without risk, but I feel that the risks in my profession are relatively well controlled compared to those in other professions (IEDs can’t be predicted; no matter how carefully you ride your motorcycle or car, it could always have problems). 

I guess nothing in life is without risk and we’re all just ephemera where the universe is concerned. With something so fragile, we should live for every moment.

Reality of Disability

[This is a follow-on from Kaliya Franklin’s superb Guardian article]

I’m sat sitting eating my lunch, which is the 30 mins of the day that I catch up on personal emails, blog, catch up on twitter/blogs and generally have some non-science-time - it’s very much a break and also the only part of the day in which my office door is closed and phone/work email ignored until my break is over. I just read Kaliya’s Guardian article on the reality of disability and I thought I’d share some of my views since this is such a hot topic at the moment.

Like Kaliya, I have Ehlers-Danlos Syndrome (EDS). This means that our collagen (the stretchy protein that is found in nearly all our cells) is a bit different to how it “should” be - in fact, in some ways, it’s a bit better, because it’s really, really stretchy. This means we can do interesting things like stretch our skin further than other people. Collagen is also found in our joints, so they’re extra stretchy too, but this unfortunately means that whilst we can lick our elbows and put our feet behind our heads without much effort, every step we take dislocates something to some degree and we spend our time shoving joints back into place.

Though Kaliya and I have the same condition, we’re a good example of why regulations/considerations for disabled people can’t be blanket-like. Kaliya requires a wheelchair; I don’t. Kaliya’s joints dislocate every few steps that she takes; mine don’t. Kaliya is so ill that she is unable to work; I am not. I use a walking stick to get around now and started using it this year. Since I have begun to do so, things have become much easier for me. Nearly 10 years ago, when I was a student, I started to get a lot of lower back/left hip pain and the doctor at the time told me it was muscular and gave me dihydrocodeine and diclofenac and told me to keep it warm and it’d be ok in a few weeks. It didn’t improve and so I saw a rheumatologist (a medic who deals in joints and immune system disorders like arthritis and lupus) and after many scans and x-rays, they couldn’t find much wrong with the joint that was causing the pain, other than it being inflamed, though not by very much. EDS was mentioned and then forgotten and I continued to put up with the pain for several more years.

After a year of severe joint and muscular pain in my face, neck, spine and pelvis and neurological problems in my arms - all of which started after a viral infection - I eventually saw a rheumatologist again (after seeing maxilo-facial surgeons, neurologists, neurophysiologists and dermatologists) and he finally diagnosed me with having had EDS since birth. He gave me pamphlets on it and the pain disorders that I have due to EDS and sent me on my way for some more scans to try and understand which areas are causing the most problems. I’m seeing him again next week to get some answers and suggestions for what I can do to help myself. 

I’ve seen Pain Management specialists too. They don’t tell you how to cope with pain or tell you to strap a pair on - they inject you full of Botox to deaden the nerves and give you prescriptions for drugs far stronger than morphine to try and give you your life back. Or at least…they used to. My primary care trust no longer funds Botox injections or about 10 other procedures for pain - apparently pain is “just pain” and we should learn to live with it. A vial of Botox costs £170 and I need it 4 times per year - apparently I’m not worth that and so instead I’m doped up with Tapentadol and Pregabalin all of the time - which probably costs about the same. Idiotic policies, as always, dreamt up by the bean counters and pen pushers who’ve never actually spoken to a patient at any stage. There is, of course, some manner of appeal process to essentially beg for funding but it takes months - they don’t seem to grasp that patients need answers fast. Pain isn’t “just pain” - people kill themselves because of it. I’ve come close myself.

Since I’ve started to walk with a stick, I no longer limp on my left leg (putting weight on that leg causes a lot of pain), which means my pelvis isn’t diagonal and my spine is no longer twisted - so I get far less spinal pain too. I’ve had a few problems of accessibility by on the whole it’s not been too bad. No one ever offers me their seat on the bus though and I had a stand-off with a pregnant woman who seemed to think she needed to sit down more than I did without even knowing why I had a stick or how far I was travelling. I sat elsewhere in the end but not before pointing out that those nice seats at the front of the bus are for “elderly and disabled” people - last time I checked, pregnancy wasn’t a disability. By all means sit there, but if a disabled or elderly person asks you to move, it’s because we genuinely need to sit down. I can stand on the bus and often do, but when I ask for a seat, it’s because I really, really need it.

This week I went Somewhere New and it was into a building that I was told had a lift, as I was going to have to go to the top floor, so I checked in advance and told them why I was asking. When I got there, it turned out the lift was broken (and had been for a while) and they were trying to fix it but it was too late for me. Thankfully, one of the staff there was very kind and held my briefcase for me so that I had a free hand to get up the narrow, steep stairs. It wasn’t too bad but the building was very old and the stairs were very steep, narrow and had wooden banisters that you couldn’t really lean on without breaking them. Normally, I can cope with stairs but that morning I was in a lot of pain and those stairs had a rise far higher than I’m used to, so it hurt. The lady who helped me was very kind and I thanked her for going out of her way to help me, but, I was disappointed that no one had bothered to tell me that the lift wasn’t working or that no one had checked, given that I had asked. There was also no attempt to try anything like moving the venue to the ground floor, it was just assumed I would be okay, even though I’d specifically made a point of phoning to ask about the lift. I don’t expect special treatment - I expect the same as everyone else - i.e. to be able to access the venue. I managed (though it was painful) but I can imagine many people would not’ve coped.

Once I got to where I was going, I had to apologise as Pregabalin makes me forget words and I stop mid-sentence like I’m about to fall asleep and have to describe the thing I’ve forgotten. I didn’t remember to mention this beforehand so I had to apologise when it happened the first time which gets me funny looks.

I got to and from on the train. Two trains, in fact, as I had to change. Kaliya had train issues in her blog post, but I cope just fine on the train and walking about. Not so good in crowds, but otherwise ok.

Both of us have the same diagnosis and both of us are of similar ages. One of us can’t walk or work; one of us can. One of us uses a stick; one of us uses a wheelchair. One of us takes lots of pain relief all the time; one of us takes it when needed. 

We’re very different though we both have effectively the same diagnosis and prognosis. How can disability benefits be issued “fairly” when people with the same diagnosis can be so different? One could assess Kaliya and say “well, if Rich can go to work, so can you” but at the same time, why not say “Rich, give up your job, you need to stay at home”. Which is right? The truth is, neither. We have very, very different needs and that is what needs to be assessed. There’s no sense asking what we can’t do - it’s what we can do that matters. If I can walk to the bus stop and go to work, I don’t need mobility allowance - what would it buy me? A new stick?! I don’t need care allowance as I can care for myself - but some money for physio would be nice as the NHS doesn’t seem to want to pay for it in the form that I need.

Mrs Hunger-Weeping

I’ve blogged previously that, as a child, I lived for reading and spent pretty much every Saturday morning in the local lending library. At some point when I was in Junior School, I came home one day to find that my Mother had been into the town food shopping and to pay the Council Tax (no Direct Debits where my mother was concerned, she manually paid (or avoided paying) everything) and, whilst there, had noticed that the Library was having a sale of old books for Not Much Cash and had brought home a big bag of books for me.

Two of my most treasured books for many years that, unfortunately, I sold as a student when skint (and now deeply regret) were a pair of “Jepsons”, properly known as Biological Drawings With Notes, Volumes 1 and 2, by Maud Jepson M.Sc (Manchester). I can’t find out a lot about Maud on the internet, which is a shame, but I do know that the first volume was published in 1938 and that the two that I had were both first editions. They are a set of beautiful pen and ink drawings, annotated in probably the most beautiful hand I’ve ever seen (during 6th form, I sat down and learnt how to write like Jepson - unfortunately, it doesn’t work well when one has to write quickly and I soon forgot how to do it!). I remember particularly the painstakingly detailed images, page upon page, of rabbit dissection, layer by layer. I learnt an awful lot from these two books over the years and, even though most of the dissections had been removed from school teaching in the years between Jepson and I, I learnt most of it from her amazing drawings. These books really captured the romance of science and of discovery and detail - they were certainly something to do with my drive to become a scientist.

Another book in the pile that day was one that vanished from my possession at some point - probably when I left home and all the books I hadn’t taken with me went to the charity shop. It took me many years to trace it on the internet and eventually I managed to buy a second hand copy a few years ago. The book was The Maharajah Adventure by Irmelin Sandman-Lilius, a Swedish-speaking Finn. I didn’t know it was a “foreign” book at the time and it was originally published as Maharadjan av Scha-scha-scha slé (“The Maharajah from Scha-scha-scha slé”) in Swedish in 1964 (and in Finnish as Sasassaleen Viltias (“The Ruler of Sasassale”) and the version I had was Ian Rodger’s English translation from 1966. As with the more famous books of the more famous Swedish-speaking Finn, Tove Jansson, it was a fantasy set in the woods and mountains of Finland - all dark forbidding trees and friendly creatures. It was a children’s book, probably aimed at little girls given that the main character is a little girl who has a talking doll. Said girl was based on her own daughter, so I’m told by the various webpages about the author. She is obviously pretty famous in Finland but, of course, why would anyone know of her books in England? The basic plot of the book involves said girl and said doll meeting a Maharajah who has exiled himself from his homeland of Scha-Scha-Scha-Slé and taken up residence in the woods of the North of Finland. Somewhere along the line a chase ensues with the protagonists running away from what has to be one of the best named character in fiction: the blunderbuss-wielding Mrs Hunger-Weeping - a terrifying enormous woman who chases the protagonists through the blizzards and snow drifts of the Finnish north.

I’ve re-read it as an adult and unfortunately, it’s not nearly as good as it was 20-odd years ago. Somehow Enid Blyton, Tolkien et al. all manage to hold up, but this one doesn’t. It’s still a nice story and I remember it really touched me as a child - Mrs Hunger-Weeping haunted my dreams for a while.