It’s Hypermobility Awareness Week!

Hypermobility - "You keep using that word. I do not think it means what you think it means."

The Hypermobility Syndrome Association is running an awareness week, so I thought I’d contribute.

To be hypermobile, at the core definition of the word, is to have a range of motion that exceeds ‘normal’ range. In clinical usage it describes having a wide range of joint movement. And more than that, it can refer to having a range of inherited connective tissue disorders which include Joint Hypermobility Syndrome, Ehlers Danlos Syndrome, and others such as Marfan’s Syndrome. In these latter cases it is never as simple as just ‘being that one kid in the class who can bend their thumb backwards’ – it comes combined with a range of symptoms that can interfere with daily life on a wide scale – from small troubles with minor dislocations and minor pain, to larger troubles with major dislocations and pain that impedes walking or driving ability, to gastric disorders or even spontaneous rupture of blood vessels, or spinal issues like scoliosis and Chiari Malformation. It’s a huge umbrella of various conditions that can be interconnected, and all of which affect each person with them differently.

I have EDS Hypermobility Type, which means I synthesise collagen badly and it primarily affects my joints and gastric system. My neck and back are bent out of shape, although you would never tell from the outside, and sometimes my head sinks into my neck enough to give me terrible headaches, particularly when lying down or using pillows / resting my neck on things. My blood vessels are extremely elastic (giving blood is difficult) and so is my stomach – it’s easy for me to get ulcers. The ligaments holding my eyes in place are too loose and it gives me double vision. But the main problem that affects daily functioning is the joint laxity and the daily dislocations. Every joint in my body does it, but particularly the feet, hips, shoulders and ribs. I used to use various walking aids – stick, wheelchair, crutches – but as my condition changes and adapts so do I – these days I mostly use shoe orthotics and stick to a specific exercise regimen to keep the muscles supporting the joints strong.

To get an idea of how different the disorder can be for different people, I have had friends with the disorder – one of whom was able to drive while I could not, but who struggled picking things up from the floor while I was fine with that, and another who got excruciating hip pain but was still able to wear high heels, which I cannot. And another still, whose main issue was preventing her blood vessels from rupturing from the smallest and most insignificant of tasks. Some of us can give birth easily, some cannot. It really depends on your personal makeup.

So that’s a general overview. I want to spend a bit of time looking at complications someone with hypermobility might encounter when having another medical issue or situation. In the past I’ve shattered bones easily, but luckily have not had to deal with plaster casts. It’s a relief, because the thought of dislocating while in a cast and being unable to set it back in myself while also having a broken bone scares me a little.

Therefore it’s topical that recently I elected to undergo surgery to remove breast tissue, which (among other reasons) I expect to lessen the number of rib and shoulder dislocations I currently experience per day. A quick note: this is not suitable for the majority of folk with EDS, because surgery is not a cure for the collagen problem, and it comes with many complications. However it was suitable for my particular case. For a non-EDS patient, undergoing this surgery forms about a few weeks of pain, the first three or so days being the most intense, and then mostly, things go fine with little complications other than potential infection.

For an EDS patient, the complications are somewhat different. My body fought off infection pretty well following the surgery, but having to not move much in the weeks following, combined with compression bandaging around the chest, meant that a lot of my joints fell out and I was unable to manoeuvre them back in properly. The shoulders and back have been the worst, but I’m actually quite happy to say that, barring the first three days of recovery, that’s where the most pain is actually coming from. It’s important to remember that hypermobile patients need to pay the most care and consideration to re-mobilisation techniques post-surgery. We cannot allow our ligaments or tendons (the connective tissue around the joints) to become too foreshortened, or we run the risk of joint issues complicating and lengthening the recovery period, and of muscle cramps and frozen nerves. But we also cannot move too much to relocate a dislocated joint if it runs the risk of reopening the surgery stitches, et cetera.

Because the surgery was largely to solve an EDS-related issue, I prepared well enough that I’m handling it okay, but it’s definitely one of those things, along with giving birth, or getting a plaster cast, that needs to be approached with extra attention for those with hypermobile conditions.

I would dearly love to write more on this, but I do need to take a break and heal up more – I have already spent too much time typing. Well, I hope I have educated you at least a small amount!

For more info do head on over to the Hypermobility Syndrome Association’s pages:

Hypermobility is only the tip of the iceberg

Gaming challenges: Mass Effect All-Engineer Playthrough

One fun thing I love doing is inventing my own video game challenges. In some games, they don’t provide enough endgame progression challenges, at least not for a completionist like me. I first saw this kind of behaviour in online forums for Final Fantasy X fans who, dissatisfied even with the epic endgame content, put together their own challenges of getting through the entire game using and levelling up only one character. Later I saw people do it with Fallout: trying to get through the entire game with zero kills. It’s the kind of idiosyncratic behaviour game testers try to replicate, and I love it. So I do it myself as much as possible.

My latest gaming challenge, while I lay in bed recovering from surgery and an just about able to grab a controller, is to replay the old Mass Effect series using a pure Engineer team. Mass Effect’s gameplay is designed to work best with cross skills from three main areas: solders, engineers and biotics. Most missions will be significantly harder of you’re lacking in skills from any sector, so whatever class I’m playing I usually bulk up my team with the classes in deficient in.

But there’s nothing to stop you using a mono-class team, as long as you distribute skills evenly within that team and plan well. So I’m doing an all – engineer team – my Shepard is an Infiltrator (so I can have medium armour and use all engineer skills) and I’m traveling with Garrus and Tali. They use sniper rifles and shotguns respectively, I only use pistols.

So far my strategies are working well. I’ve been mostly buffing my shields and weapon damage and managed to take down a Geth armature using only a pistol today, so it is working.

If it’s a success I’ll have to try it again, up the difficulty.

Midweek Music Picks: Pure Reason Revolution

Pure Reason Revolution are a band that caught my attention first as prog, but I soon realised they were inhabiting the prog genre at the most progressive, eclectic fringes of it – as you can tell upon listening to the song below, Blitzkrieg.

The music hovers between the electroclash rock of Justice, the fast-paced drum’n’bass rock fusion of Pendulum, and the chaotic soundscapes of electronica artist Hans Appelkvist: synthy guitar riffs and strong drumbeats are peppered with Eighties style Orchestra Hits, the odd house clap, before descending into broken rhythms and chopped-up blurts and bleeps, then building up again with polyphonic chorus into an insane fusion of sound, using noise as sculpture, painting crescendo onto seconds.

The slightly dystopian futuristic undertones of their themes (the intro samples of Blitzkrieg, for example, are from 1962 post-apocalyptic French film La Jetéesuggest something akin to Rush’s 2112, which makes sense considering the band’s first producer also produced Rush’s music.

Furthermore this band is from the town next to where I used to live in the UK (Reading – a wee bit north from the birthplace of Genesis). Nobody seems to know where to place them – they have been labelled prog, electronica, alt rock, new prog, and bizarrely ‘Astral Folk’, even garnering a good review from keyboard wizard Rick Wakeman. It’s a shame they’ve split up now, but one can always hope, because this music rocks.


The Watch plays Nursery Cryme

Italian prog rockers The Watch are the Genesis continuation we always wanted. Officially endorsed by ex-Genesis guitarist Steve Hackett, they do amazing covers of classic era Genesis songs. Their original albums, while having their own distinct flavour, are tantamount to the Genesis albums that never existed but that totally should have. Imagine, if you will, that Gabriel and Hackett never left and that classic era of music had been allowed to progress in that vein. This would doubtless be the result. I have so much love for this band, so you can imagine my excitement when I heard they were coming to Oslo.

The band kicking off the concert

The concert, held last Saturday the 30th January, was billed as ‘The Watch plays Nursery Cryme’, but what we got was so much more. Not only did we get plenty of The Watch’s own music, including a few wonderful songs inspired by the Italian Alps, but we also got a sly couple of songs from The Lamb Lies Down too. And, let me tell you, as soon as those gentle guitar strums and first Mellotron sweeps hit the air, the room was electric.

“There’s something solid forming in the air,

And the wall of death is lowered in Times Square…”

We could all feel it, and in that moment I knew we were enraptured, part of the show, the adventure. We were all Rael then.

The atmosphere electric continued on as they played through Nursery Cryme with stylised restraint. I loved this aspect of the band – it is clear that they are virtuosos, but they let out only as much as is needed for the song, giving the stark impression that they are holding back a powerful hurricane. The lead singer, in particular, Simone Rossetti, embodied the essence of Gabriel’s countenance in ‘Watcher of the Skies’ – a solitary, austere figure, voice tight as a tightrope walker, letting out just enough of the music to make the maximum impact. Less is more, in this case, and it was magical. It belonged to another universe.

Nursery Cryme was indeed played in its entirety, but not in order. This was a surprise for many in the audience, and by the time the album’s stellar track came out, The Musical Box, we were ecstatic, and more so from the unexpectedness. I was deeply happy with the guitarist, Giorgio Gabriel, and his ability to sound every inch as ethereal and heavenly as Steve Hackett. The sound of his guitar playing like waves lapping at the shore. Songs like Harlequin in particular, so dreamlike.

The keyboardist, Valerio De Vittorio, had amazing technique, using Moog and Mellotron to maximum Seventies effect. This really came into its own on the band’s original songs, where the keyboards seemed more striking than the soft waves of Genesis. And the bassist, Mattia Rossetti, impressed many by handling a multi-neck bass and 12-string guitar. Sometimes it amazes me all over again to witness how every single sound from these songs can be made with a group of just five people. Listening to the records, it is so layered that it always feels like it should be so much more.

Once the final song was over and the dust had settled, the encore came. I couldn’t believe my ears when the band announced they would be playing Supper’s Ready from the album Foxtrot. What a treat! This was so much more than I ever could have expected!

So the twenty-three minute epic journey of apocalypse, as envisioned by Peter Gabriel forty four years earlier. The dulcet tones of the intro began, and everything sounded perfect. The mood in this small blues bar, filled to the brim with fans, was like nothing ever experienced before. All of us, I would hazard to say, knew this song in particular, Genesis’s masterpiece, and united by a common love we all fell under the song’s sway. It would not be an exaggeration to say it was a religious experience.

I have to give particular kudos to the drummer, Marco Fabbri, who tackled the section ‘Apocalypse in 9/8’ with aplomb. I have to admit I’ve never heard someone drumming in this time signature before, and it was so well handled. I also really liked the Gretsch kit, a callback to the kits Phil Collins used in this era, and what was interesting and probably due to how small the venue was (and possibly the fact I was right at the front too), was the hard, punchy tones that resulted – it was quite different to the recordings, but made for a nice offset against the taut vocals and dreamy keyboards and guitars.

I also feel that Simone Rossetti flourished in this song. It felt like the entire concert was leading up to this point – the release of those slightly-off-kilter but perfectly placed vocals. I think Gabriel ought to be so proud.

The clock ticked well over midnight as Supper’s Ready, and the entire gig along with it, drew to a finish. I have heard that The Watch return to Oslo every year, so I am looking forward to next year’s show already. Every time I see such a large crowd coming to attend prog-related shows in Oslo I become ecstatic, almost with disbelief at the fact that there are so many others who share this obsession with the somewhat odd and niche music I listened to in my childhood. It’s a good thing, and this particular experience is one I will remember.

Here’s a link to their album ‘Tracks from the Alps’: